Thanks again all for the love and support. I have so much to share and am grateful to those willing to listen. This event will NOT define me. It is NOT who I am. I will define it! Today’s post leans heavily on the reportage and technical side of things. I have other things percolating including the role animals seem to play in my spiritual world. So thanks for tuning in. I tried in vain to stream Mozart No.6 K14 in G Minor but to no avail. Photo project en route as well.
There is, somewhere in my home, an illustrated children’s book called “It Could Always Be Worse” A Yiddish folk tale in which a beleaguered villager from the shtetl seeks spiritual guidance from his Rabbi about the stressed state of affairs in his cramped one room domicile, where he lives with his six children, wife and mother. As the story unfolds, the Rabbi instructs the man not to clear his house but to fill it with more and more animals until chaos unfolds beyond the gentleman’s ability to comprehend. Each time the man returns to the Rabbi for more advice, he is told to collect more animals. At the very end, when the man is about to break, the Rabbi tells him to now clear his house of all oxen, sheep, goats, chickens, etc. The refrain “it could always be worse” takes on new meaning as the man is given a fresh perspective on what he considered to be a miserable life. It could always be worse.
Yesterday was a visit to Dr. Fadul, Professor of Medicine and Director of the Neuro-Oncology Program, and Dr. Jarvis, Assistant Professor, Radiation Oncology. A kind, gentle man originally from Columbia, Dr. Fadul warmed my heart and soothed my soul. He was impressed with the speedy recovery and expressed concern for my family, my daughter Hannah in particular who had been with me from the very beginning. He asked Barb if I was behaving and she assured him that she had the taser set to high.
He then explained again that he was intrigued by the rarity of my cancer. It reminded me of a favorite quote I used to use when anxious, over-protective parents (I plead guilty to the crime as at any given point we all let our daddy-bear/mommy-bear claws out from time to time) armed with swaths of bubble-wrap would give teachers and staff headaches, thinking that their child was rare, super-special and deserved more attention than their peers at the expense of their peers. We call them scorched-earth parents and fortunately for those of us working in the field represent a tiny fraction of the population but account for 99% of the headaches.
“Each child is unique, just like all the rest.”
All cancers are unique in their own way as is the way in which individuals, friends and family deal with the crises. While I am now armed with reams of literature on how to cope, deal with, address, manage, ameliorate, defend, protect, help, support, care for this new reality, there are no rules or steadfast answers on “how to.” Ultimately you just do what comes naturally. Some fight, some surrender. Some laugh, some cry, some withdraw, others seek others. Most, I believe combine all of these elements as it is indeed a roller coaster ride of emotion.
Moving away from the statistics and numbers, he shared that he may see a case like mine once every two years or so. That this is a disease normally affecting children makes this rare. That the cancer did not occur in the spine as it often does makes this rarer. That the tumor, normally found near the cerebellum, was growing in the “supratentorium” makes this rarer still. In many ways, I am my own statistic as there is little data on these tumors in adults.
So the good news? The cancer is not in my spine and thus I will probably not need a lumbar puncture. The PITA news? (PITA was a nickname coined by a friend whom I harassed in loving fashion. It stands for Pain in the Ass)
It is highly likely that, because the best outcome for this cancer is a “total gross resection” of the tumor and because of the fact that post-operative scans showed that while most of the tumor was scooped out (my words) there are signs that a small (2-4%) is still left inside. Radiation ( more on that in a moment) alone is not enough to kill what is left. So while I now have a few titanium screws and a plate n my skull ( I am really beginning to dislike that word- skull) they did not put a hinge on the replaced bone which means a second surgery. Lord knows what they will find in there. I may ask them, in true “Wired” magazine fashion, if they might not consider installing a one-terrabyte hard drive and a USB port when they got back in. My guess is that this idea will not seem completely absurd in a matter of years. Imagine going to work, installing your “Work Flashdrive” with no need for a laptop! At the end of the day you replace it with you 500G flash drive of music. Want to watch a movie? Have them install a wireless chip. Actually forget the flashdrive. It should all be wireless. Movies, GPS for driving, hiking, bicycling, recipes, music. I’m ready.
Here is a scan of my now empty space where the tumor grew.
and the bummer, on the image below, the white spot on lower left near the “hole” is not scar tissue but the remnants of the tumor… Dr. Erkman is a master doctor and craftsman. At the time of surgery they had no idea what kind of tumor or whether it was benign or malignant and erred on the side of caution as getting at the tumor too aggressively could have resulted in serious consequences. It IS brain tissue after all. While I am told the cancer will indeed grow back, there is no telling when or how fast at this point, but getting what’s left will be an investment for the future. I may have some permanent left-side “deficit” depending upon what happens but hopefully this will mean nothing more than the fact that I need to be careful around fire and ice as I might not be able to sense injury, heat or cold. No big deal.
What I was told is that I would have been dead in a week as the tumor, which was bleeding from within as aberrant cells were seeking blood sources would have “herniated into my brain stem. Deep breath. Leos, being felines, have 9 lives and I’ve got a few left.
The next part of my visit was with the radiation team. I will endure 6 weeks of radiation after my second surgery if that happens. I will lose my hair (not a big deal!) feel tired, perhaps nauseous and look like I have a bad sunburn. It is VERY strange to receive material entitled “Brain Irradiation: Information for Patients.” Yikes! For some reason the cult-film Toxic Avenger and Bruce Banner from the Incredible Hulk comes to mind…
While there is risk of a secondary “radiation tumor” down the road, the risks are of course outweighed by the benefits. The dead and dying cells, called radiation necrosis can be difficult to discern from growing cells on the MRI ( I think I have this right) and I will have an MRI every three months for a year, every 4 months for a year and every 6 months thereafter to keep an eye on things. If the cancer returns, we will cross that bridge when we need to. As radiation treatment is usually a one-time gig, chemo or clinical trials, for which I will be eligible are possible options.
SO I left feeling a little like a character in a boxing movie. Up and fighting but perhaps a little punch drunk. “He’s up, he’s down, he’s up again!” Dang they have to go in again! As anyone who knows the film Rocky or grew up in Philadelphia remembers, there was a time when every kid who had the chance would run up the steps to the Philadelphia Museum of Art and pump their fists in the air. If you were authentic you might even wear a grey hooded sweatshirt and speak with a thick Rocky Balboa accent, screaming “Adrian! Yo Adrian!” I was there, just for a moment. (My how the Philly skyline has changed!)
As I mentioned, this post will be a little on the technical side for those interested. In radiology they fitted me with a very cool Freddy Kruger-esque hockey mask which will be my fixture for radiation, Designed to keep my head in place (ok, add ironic comment here: ) it will also help target the appropriate beams.
Some pics for your pleasure (all I could imagine was the agony of waiting endured by movie stars undergoing mask creation for such movies as the Planet of the Apes back in the Roddy McDowell day, According to my old sci-fi mag Starlog, those masks took hours to create. This took less than 3o minutes. And yes, I felt like one of those crazy Mexican wrestlers a la Nacho Libre!
In other technical data, within the 60 pages or so of the initial report is an enormous amount biological data. A few intriguing pieces include the pathology report detailing “right parietal brian tumor, fresh, with several tissue fragments of white-red neural tissue with areas of hemorrhage and necrosis” with “all pieces of brain tissue” (words together that do not sit well with breakfast) are submitted in three cassettes. Because there was some question of additional cells different from the anaplastic ependymoma, possibly “oligodendroglial differentiation” they have sent the samples to the Mayo Clinic for further research.
The surgical report is equally fascinating. I know this may have a “look at me” voyeur-exhibitonist quality, but I am amazed at the science and carpentry. And I hope it helps understanding. The surgery was labeled “CRANI, for tumor, supretentorial, stereotactic computer-assisted navigational cranial intradural microscope use” for a hemorrhagic right parietal mass. Choice phrases like “hemorrhagic mass with surrounding edema” and “after prepping and draping in the usual sterile fashion, a local anesthetic of epinephrine was infiltrated into a linear incision. This was carried down with a #10 blade.” Retractors, burr-holes, elevating dura, “opened in a horseshoe shape,” “bone on back table was prepared with Leibinger-set titanium (my favorite!) plates and screws. This was used to affix patient’s bone flap to his skull.”
So I am off to Houston soon to see those who will offer their own experience and wisdom as to what lies ahead.
I cry, I laugh, I am irritable. I can’t sleep very well. Steroids and seizure meds can have this effect as well as the usual adjusting-to-new-harsh reality stress. I can’t wait to get back to work, ride my bike, ski, kayak, have a finely crafted margarita with fresh lime, Patron Silver, Cointreau and a splash of Grand Marnier. All in due time.
That my head needs to be opened up again so soon is a drag but I’ll be paying it forward. My love goes out to friends and family and especially to the parents of children who are the ones who normally suffer from this particular cancer.
Two thoughts to leave you with…
“The journey is the reward” – Tao Proverb
“It goes to 11.” – Nigel Tufnel, Spinal Tap