Drum sounds rise on the air,
and with them, my heart.
A voice inside the beat says,
I know you are tired,
This is the way.
Lately I have been thinking about my days in terms of the trash compactor in Star Wars in which Princess Leia, Chewbacca, Han Solo and Luke are nearly crushed to death as they try to escape enemy fire from stormtroopers while aboard Death Star I. The walls of time, during moments which often cause my knees to buckle, sometimes feel as if they are inching forward in a manner unstoppable. And for you Star Wars aficionados, you may recall Luke being dragged under the sewage and detritus by a large reptilian “Dianoga.” It is an easily drawn metaphor to argue this beast is the cancer. Will someone please hand me a light-saber?
The third craniotomy, the term alone has a medieval gruesomeness to it, went exceptionally well despite the tumor having spread towards the superior saggital sinus, the central outflow for blood in the brain as it circulates through the entire body. Dr. Cahill felt confident that he resected the new tumor growth successfully. And I now have an updated diagnosis of “mixed glioma” consisting of a fine blend of ependymal and astrocytic tumor cells. Well isn’t that just a fine picnic?!
I am about to begin my second round of chemotherapy, Temodar. It’ll be five days on, twenty-three days off for a year. The medicine ultimately exits the body in twenty-four hours. I just learned my dosage will also increase. With the first course, I experienced some fatigue, a burning sensation throughout my body which eventually dissipated, and some discomfort from the anti-nausea medication. These are cytotoxic drugs after all, so of course there will be some effect. I even think the packaging warns against handling the pills and avoiding contact with the skin. I can only imagine the internal effect these scientific poisons have. Mind you, Temodar is only one of a very few FDA approved drugs for brain cancer.
I found this wildly bizarre and amusing gem created by a fellow brain cancer comrade, Alex Moore, which recalls some very distant memories of cowering behind the couch in my parent’s simulated woodgrain paneled basement watching Ultraman. It also reminds me of a favorite Beastie Boys video, Intergalactic, inspired by the same genre of Japanese Tokusatsu television. (One Beastie, Adam Yauch, died last May of salivary gland cancer at 47 as did a dear acquaintance only a few weeks ago)
“A million ancient bees began to sting our knees.” – Regina Spektor
Most irritating and sometimes frightening, has been seizure activity and the “aura” effect on my left side. Keyboarding can be a cumbersome task especially if fatigued, but most of all I worry when the seizures are more intense. It starts with a sensation of an attack of bees, starting with my left foot, (not ironically one of my favorite films) traveling up my leg and on two occasions, up the left side of my head. All I can say then is “please, please no, not now.”
Eventually the activity ends and my body calms down but, given the electrical storm occurring within, I am left exhausted. Imagine a torture device involving a car battery and cables attached to your legs. My sympathy for those who have suffered strokes, victims of accidents, those with cerebral palsy and other neurological symptoms which disallow control of their own bodies has been amplified as never before. I do know these symptoms, now better managed with Depakote, 1,000 mg in am, 1,500 mg in pm, are often precipitated by fatigue and/or stress. I can also feel them coming on so at least I can batten down the hatches and prepare for the neural overload.
But like our friends in the trash compactor, I try to find new ways of slowing the progress of this disease. Anything to hold the walls back from closing in. If not in body then at least in soul and spirit. I realize I need to dance, write, bike, swim, cook, fish, sing, skip, laugh… more.
There is much to be thankful for and much hope as well – in the words of one compassionate, brilliant brain cancer doctor, Henry Friedman at Duke shared in an interview with Dr. Sanjay Gupta, “I don’t want to see my patients die with dignity, I want to see them live with dignity!”
Lately I have been relishing the success of working for Accelerate Brain Cancer Cure, the joy of witnessing Hannah and Libby evolve and mature, spending time with friends and family, and digging deep down into the spiritual core of not only what it means to live but what it means to die. This is often heavy lifting, but I am an eternal optimist and at the end of the day I just want to dance. Turn up the damned music!