I will show you fear in a handful of dust.
-T.S. ELIOT, The Waste Land
You are told that tomorrow morning you are leaving for a remote faraway land, you do not speak the native language, and you need to learn how to read, write and comprehend the mother tongue. You have less than 24 hours.
Or, imagine you are in a library looking for books in your favorite section. Perhaps architecture, music, political science, environmental studies or prose. There is a tremor. The lights above you begin to flicker and before you can do anything about the earthquake, you find yourself trapped beneath several bookcases. You are quite literally being smothered by books, magazines and brochures. And the worst part? It’s a section you normally avoid.
It that shall be named!
A friend, who experienced her own tragic loss years ago, shared with me that just as Albus Dumbledore convinced Harry Potter to “own” Lord Valdemort and speak his name, hitherto referred to as “He who shall not be named,” that it was important for all of us to speak the name of that which afflicts and has invaded our lives. For us, spoken with the sickly, Valdemort-esque hissing undercurrent of resentment: “Cancer. Tumor. Brain Cancer. Anaplastic Ependymoma Grade III.”
“Always use the proper name for things. Fear of a name increases fear of the thing itself” explained Dumbledore to Harry in The Sorcerer’s Stone.
In my black, overstuffed, Timbuk2 messenger bag, on our night stand, on our kitchen table and in the car, which now overfloweth, we have a new library under from which Barb and I come up for air when we can:
Magazines from DHMC and MD Anderson as well as a free (bonus!) subscription to Cure: Cancer Updates, Research and Education. Pamphlets on “Patient Advocacy,” “Social Work,” “Oncology and your Diet,” “Ependymoma: Focusing on Brain Tumors” (from the American Brain Tumor Association) and, my favorite, “Ways of Giving to MD Anderson,” As a development professional, I winced and smiled simultaneously. A perfect captive audience. Good work Advancement team!
Also included, several nicely produced brochures, some fifty pages or more, tabbed and indexed: At Your Service Handbook for Patients, Welcome to MD Anderson- Where your needs are our concern, Patient Handbook from the MD Anderson Brain and Spine Center, The National Cancer institute’s Support for People With Cancer Series: Taking Time and another from the same series entitled Radiation Therapy and You (published by NIH and US Department of Health and Human Services), ABC’s of Cancer at MD Anderson, and perhaps most remarkably, and inexplicably, a beautiful package from The American Cancer Society with organizational folders for bills, insurance, medical questions, reports, etc. as well as a very thorough sixty page booklet on Brain and Spinal Tumors in Adults. This was received three days after my initial surgery and the shock value was akin to receiving, unsolicited, your first mailing from AARP.
Along with the trove of printed material, the on-line resources are daunting, impressive, scary and ultimately a useful tool if applied with caution. We all have differing abilities to sift and sort through the web. Whereas one friend might find an exceptionally obscure but relevant medical abstract, another might find some well-intentioned (or not) but completely out-to-lunch holistic remedy. As the internet has sadly become ( as it was not originally intended) a monster for the marketplace, cancer as an industry, including on-line, is a multi-billion dollar enterprise. Upon the initial trauma and subsequently overwhelming diagnosis, we were told by many friends, family and medical professionals to stay off the internet until we know more lest we become sucked into the vortex of misinformation which begets fear, confusion and loathing. I did my best to abide save for one moment early on when my eyes locked on the morbid statistics of morbidity for this particularly cunning and rare disease.
I have had no problem downloading and processing the thousands of virtual information trails leading to answers as I feel I have a fairly capable BS-meter. I have even watched medical videos on brain surgery and the removal of similar tumors. It helps me understand the nature of things. Yes sometimes it makes me queasy, but the benefits of learning outweigh any induced nausea. Watching how the head is stabilized, it’s no wonder my temples hurt as they clamped me into a Mayfield Halo!
Brain surgery appears to be akin to trying to cauterize and sew up a moving jellyfish as the brain is indeed moving during surgery, pumping blood to keeps things going. This is one organ they cannot shut down during a procedure. Watching surgeons carve out a bone flap was like watching very sophisticated sculptors or master carpenters at the peak of their craft. And now my head has more titanium than my beloved bike. Buzz, drill, cut, saw, screw. Dr. Erkmen and his team are not only deft, brilliant surgeons, they are master craftsmen and women. Art and science in matrimonial bliss.
Wordplay: My empty space is now filling up with a whole new language. Words which have been woven into my new-found dialect include: craniotomy, Mayfield halo, dura, skull, 1.5. Tesla and 3 Tesla MRI, salvage therapy, proton beam, photon beam, chemotherapy, clinical trials, nausea, radiation burn, radiosurgery, grade II, grade III, anaplastic ependymoma, glioblastoma (GBM), metastatic brain tumor, oligodendroglioma, glioma, astrocytoma, glioblastoma IV, subependymoma, cerebral spinal fluid (CSF- I dread that phrase), oncology, radiology, de-bulking, DuraBond, survivor, palliative care, living will and testament, prior-approval, intensity modulated radiation therapy, 3-D, catheter, IV, leviticeram, hydromorphone, total gross resection, supratentorium, posterior fossa, ventricle, social workers, CT scan, cancer. And of course if I were to sum up everything I have written, to its most base, primal level? Apologies to those offended by foul language but here it is: F**k. F**k. F**k…F**k!
I am blessed and grateful to so many people for their outpouring of love and support not just to me but to Hannah and Libby, Barb, my parents and Laura. I know I have been included in countless prayer circles, included in prayer, love expressed in cards, food, flowers, texts, emails, phone calls and visits. I wish with every fiber of my being I could repay these gifts ten-fold for I am humbled.
Amongst the well wishes, prayers and gifts there were two comments expressed which left me laughing aloud.
One was a text sent to my phone immediately after surgery from a close friend and former colleague who had interrupted his vacation on Nantucket to fly back to New Hampshire/Vermont and visit me and family in the hospital. “Now that you have a new hole in your body, may I suggest keeping your fingers away from this one?”
Another was from a former student and a friend with whom I still keep in touch. He is a sculptor living in Rhode Island and creates incredible art using industrial grade cables and literally knitting them together into art forms with enormous construction equipment. His email read, quite simply:
“Dude! Brain cancer? A tumor the size of a golf ball? F**k! Seriously, f**k! Wow. Umm…f**k!”
What I am trying to learn is that it’s OK to let it all out…but how? And when? And to whom?
Oh, and by the way, my visit to Houston at MD Anderson was nothing short of breathless, in every way. Upon returning, I received another, higher resolution MRI (3 Tesla) and now know that photon radiation, not proton is necessary. Monday morning I meet with the incredible Doctors Erkmen and Fadul to decide on next steps: the possibility of a secondary surgery to remove what is left of the cancerous tumor and then determine subsequent course of radiation.
The scans below, which are eerily beautiful, appear to show residual tumor but that is my observation only. We will hear the opinions of the doctors at DHMC as well as Dr. Gilbert in Texas by the end of the day Monday. Bon Voyage Mes Amis!
The image below, while not showing tumor as it is at a different phase of the MRI, is a work of art…I am not implying, by the way, that I am a work of art but the brain itself…and presumably, we all have one…
Laugh. Love. Live.
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our Light, not our Darkness, that most frightens us.