“home, is where I want to be, but I guess I’m already there…”

“It’s a shame to be caught up in something that doesn’t make you absolutely tremble with joy” – Julia Child

…perhaps one of my favorite celebrities and most beloved of all quotes. Thank you Julia. And by golly, radiation and brain surgery is no joy but I will carry her words with me to push past this and find the tremble…the good tremble…

Two days to the start of radiation therapy to my brain. Six weeks. Five days a week. Barb, who works as a physical therapist at a remarkably loving place, Sojourns Community Health Clinic in Westminster, Vermont, now has a second job, unpaid, in addition to being a mom of two of her own children and trying to tend to her own needs and challenges. She has scheduled all appointments, kept track of the meds to ensure I am taking the right dosage (“two or three blue ones?!”) arranged transport, and is with me on every doctor visit. I’m a lucky man. I wonder and worry every day about those with nothing. With nobody. I think about the fact that three out of every ten Texans have no healthcare and is a state with one of the highest rates of uninsured children as well one of the few states with rising infant mortality. (Who the in the world is voting for Rick Perry?! The politics of mean are alive and well)

But this is where the guilt comes in. Barb didn’t ask for a partner with an incurable illness. I used to joke “I promise not to be a burden to you…” I know I’m enough of a handful as it is. A P.I.T.A. (nod to Tammy W. for her acronym: “Pain in the Ass!”) So much for promises. I have promised her I will not become even more of a burden and if I so become, to toss me in a boat without a paddle and send me downstream.

While I am a tinkerer, I have yet to figure out a way to jury-rig the microwave to self-administer radiation. That might save a lot of time, no? Not quite sure how to direct those beams…popcorn is one thing, but my brain? Hmm.

Today I had an EEG, an electroencephalogram, (more hair ripped off my chest) to analyze brain activity (very little, the nurse and I joked) and determine if I can taper off the 1000 mg daily dose of Keppra, anti-seizure meds, which would be welcome. Keppra, by the way, sounds like a yiddish word, kepele, which means head, as in “A leben ahf dein kepele” which translates into “a long life upon your head!”

As mentioned, Wednesday I begin radiation. I am told that fatigue and nausea is likely within the first few weeks, hair loss (not much to lose) and redness as well as a few weeks following. Given my proclivity for physical and mental hyper-stimulation, slowing down a bit might not be so bad. We shall see. I will work in the morning and leave mid-day.

I will soon see somebody professional to help me process the avalanche of emotion I experience daily. It’s nice to live in age where seeking help has less of a stigma than it once had. Even the military is making great strides to embrace the notion that trauma to soldiers happens to the heart and soul as much as to the body. I need some new tools in my toolbox to cope with the road ahead. I suppose we all do. For me, Yoga, friends, breathing, exercise, music…more fruits and vegetables…

One of the most difficult things as of late has been facing the reality that while some cancers are in fact “beatable” this is one you can only “beat back.” There is no “winning” or “beating” this. It is incurable. So much is unknown. The best approach, in addition to filling the empty space in my head with love, humor, friendship, community, food, music and journeys into the wild, is keeping it at bay and watching it like a hawk watches its prey, or a CIA operative watches a target. Perhaps a clinical trial will come about which will offer hope. Which is one of the reasons why I went to MD Anderson, which is, ironically, in Texas! Already, the 5-ALA trial, in which I participated with great success, is becoming international news.

There are awkward moments, which are unavoidable, when friends and neighbors, well-meaning, become tongue-tied. When I see the signs of fumbling for words, I try to help and share that there really is no easy language for any of this and it is perfectly OK not to know what to say. Some offer love, kisses, healing, prayer, hugs, a bottle of scotch (!) and some will offer their own tales with cancer and disease.

The hard part is when they share, optimistically, “oh, you’ll beat this! If anyone can beat this it’s you!” While I agree the battle for the spirit is at least half the battle itself, those are high and hopeful stakes. And these words of encouragement are helpful and vitally important. They are the wind in my sails. But because, I believe, we are generally so isolated from the realities of our own mortality and the fact that in the end, we all wind up as star-dust or, simply, compost, that we lack a common language. We let children play outrageously violent video games and watch unnecessarily horrific films and yet we shield them (mistaking this for protection) from the realities of real death and dying. I think it distorts reality and confuses us all.

One of my aims with putting everything on the table is to try to demystify some of the unknowns by charting a course for my disease in the hope that it can also help others heal through understanding of the physical, mental and spiritual toll this awful mess creates for all involved as well as the opportunities it presents. It’s the end, it’s a new beginning. I am here.

Words and sentiment shared are only meant to help heal and support. But, depending upon who it is, I might either nod and smile and offer thanks, or I may bluntly share, “no, actually, this one doesn’t get beat. There is no “win,” only buying time. And it is in a currency I do not fully understand.

When I referenced author Aleksander Hemon’s heart-rendering essay “The Aquarium” in the New Yorker, about losing his young daughter to brain cancer, I don’t think I realized then how apt the aquarium metaphor was. I am indeed encased in a world where I can see and hear what is happening but there sometimes remains a translucent wall between myself and the world around me. It is a bizarre, out-of-body experience and I often feel a sensation of floating above the clouds. I think it’s a protective mechanism.

Sometimes this affliction is emotionally debilitating. It is common for cancer patients (and others with life-threatening illness) to contemplate their own mortality in a light which prior, was never turned on. Of course, for those of us who have experienced the death of a friend, neighbor, loved one or family member, these opportunities offer a similar chance for reflection and for looking forward: of plans not yet made, of dreams desired and unfulfilled.

The mere thought of leaving Hannah and Libby, my two empowered, intelligent, worldly daughters, brings me to my knees. I try not to dwell on this topic too often. But there are reminders. Even a Hyundai ad, Hope on Wheels, for support of children with cancer, brings me instantly to tears. Any thought of Barb, my parents, sister, family and friends, community…in this regard…it’s just too hard…words fail and in this instance, don’t have a place. To be frank, I think we are all still in shock.

Hannah, who was with me from the beginning, including being there when the doctor delivered the news of the cancer, continues on her own path of strength, pursuing her dreams and leadership. She recently and without my knowing, started a cancer support group at her school. There are over 50 members, students whose lives have been affected in some way by cancer. And just a few days ago she and a group of students initiated a group to help fund raise for a walk for breast cancer. She has already doubled her goal. Again, I knew nothing.

And Libby continues on her great path, her love of horses, of music, of cooking and of good friends. Libby is a joy with an infectious joie de vivre that knows no bounds. This has matured my daughters in a way no parent wishes, but I believe it has made us all stronger and closer.

Other times the diagnosis has been empowering. I feel emboldened. Speaking my mind, expressing myself, for some reason, feels easier now. This very blog has been in my heart forever but I have not had the bravery to jump in. My artist-musician-culinary-writer-political-entrepreneurial-leader friends I have only unparalleled respect for: putting your heart, body and soul on the table, exposed, for all to see, to be criticised and judged is the ultimate risk. It is a brave act and they are courageous.

Today my mother sent me an Elvis CD entitled “Gospel Favorites.” Her favorite Elvis gospel song happens to be “How Great Thou Art.” She lives in many worlds, my mother. She holds two master’s degrees, was a dean, taught English and psychology at the high school and college level, has her nails manicured weekly, and plays classical piano on her most beloved object, her Baby Grand Steinway. In another world, she drives an old and much-loved Chevrolet Blazer with a vanity plate which reads “Meta-4,” speaking to her literary roots and teaching background, and on the front, an “I Love Elvis” plate. She is a country mouse living in a city nest.

I grew up listening to Elvis (as well as her true love, Joan Baez) and was moved by her gift. I remember clearly the day he died and yet I was two days away from becoming ten years old. My mother was sobbing as if she had lost a best friend as the crackling news came over WABC-AM radio at the cabin where we spent our summers. As complicated as I find organized religion to be, give me some great gospel any day and I’ll sing to the sky: Sacred harp, Mahalia Jackson, Blind Boys of Alabama, etc.

For you Momma:

and in a nod to the title of this post…David Byrne, who has his own gospel… This Must Be The Place (Naive Melody)

Amen.

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3 Responses to “home, is where I want to be, but I guess I’m already there…”

  1. Karen J says:

    May you have more of this: “filling the empty space in my head with love, humor, friendship, community, food, music and journeys into the wild,” and your gosh-wonderful daughters and partner, and may gratitude find more traction than bitterness — surely you have more than enough reason for bitterness, but may it slip away easily…

  2. The best that any of us can do is live well under whatever circumstances we are in.

    And incurable doesn’t mean not manageable.

    30 years ago, my aunt was the first person in Canada with a particular brain tumor part and 2 men were diagnosed later the same year. One man died on the doctor’s predicted schedule, the other man’s cancer when into remission and my aunt’s tumor stabilized.

    I also have an uncle who was so injured in a farming accident that the hospital only stabilized him enough for family to say good bye – when he was still alive the next day, they perform repairing surgery, but said he’d never walk again and six month later, he threw away the cane.

    These anecdotes aren’t on point for your condition, except for the need to fight to live for as long as you have quality of life.

    My heart goes out to you and your family.

  3. Raquel Fopma says:

    Oh! Mark, time and again, your writing touches the core of my soul! May I be so bold as to suggest you add meditation to your list of “coping tools”? Know that, I am thinking and praying for you. Raquel

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