Cradled and tethered to my naugahyde nest in the infusion room, I slump: a speckled black and white composition book in my lap and Anne Lamott’s Bird by Bird, Some Instructions on Writing and Life rests on the arm of the chair. In my right hand, a uni-ball Vision Elite scribbles intermittently as thoughts, induced by these unique circumstances, surface, hover momentarily, and float off, mixing, I muse, with those of my companions who stare vacantly or read or chat with friends as they too take their daily doses.
“Are you reading or writing?” Nurse Autumn asks as she pushes 5 cc’s of Velcade into my vein.
“A little of both,” I laugh.
Savor it. Taste it. Let it settle deep inside, unaccompanied by thunder or tremulous angels. Challenge and delight, agony and commitment. I digest Lamott’s writing and think about what’s settling deep inside of me today. “How alive are you willing to be?” she asks. “Tell them what’s normal for you…”
When blood runs thick and protein clusters jam the vessels, words like normal or conventional no longer have relevance. Nothing is normal any more…not skin texture, not energy level, not mucus membrane lubrication, not heart rate, nor hand coloration, nor patience or empathy or taste sensation. Not even vision or hearing falls into my recollection of what “normal” was. The war between monoclonal antibodies and lymphocytes effects every cell; in some, the bad guys are winning: puss and itching raise concerns in mucus membranes, but the hired troops raised a victory flag today with the IGM down this week by1000 points to a walloping 4622! The commanding officer scans the lab results and sends out orders for today’s artillery: Velcade, Dexamethazone, Diphenhydramine. Hidden from view is the avarice of the mega-pharmaceutical tycoons naming their prices for life saving drugs. No one can crack their armor, it seems…so like the oil companies. So like the banks
Today, I want to talk about the personal expenses related to cancer and chronic disease of any kind. We often discuss the sadness or pain of illness or death, but we don’t talk about the costs and we should! The co-pays add up. The 20% of this and that add up. Today, my eye drops were to cost $75.00 AFTER my insurance paid their part. (Due to hard work on the part of my pharmacist, we found a cheaper alternative) This is a tiny vile that MAY help and if it doesn’t, I’m to see the ophthalmologist on Friday.
There’s the primary illness…cancer, in my case. But any cancer or chronic disease diagnosis generates parasitic relationships with all manner of people and products, the worst of which are the almighty pharmaceutical companies. Jim, tenacious fighter that he is, won the battle with the insurance company and they will pay 90% of the cost of my Velcade. But, Folks, just so you know what being unwell can cost, I need to tell you that Velcade for this protocol of six months will come to about $90,000. And the Rituxan will come to about $200,000. Those little percentages add up in a hurry and my protocol is “gentle” and a lot less expensive than more aggressive protocols for more energetic cancers.
I tell you this because I like to share new learning with my friends. I urge you to examine your health profiles and practices. There is not better investment for your old age funds than avoiding doctors, drugs, and medical procedures of any kind. A penny saved is indeed a penny earned. For the love of money and good juju, take care of yourselves!
OK, I admit it. It’s the Dexamethasone that keeps me rambling long into these Wednesday nights, but I want to bring this full circle. I started with Anne Lamott and I want to end with the final paragraph of her book. Her students ask why writing matters and she responds with this:
“Because of the spirit, I say. Because of the heart. Writing and reading decrease our sense of isolation. They deepen and widen and expand our sense of life: they feed the soul. When writers make us shake our heads with the exactness of their prose and their truths, and even make us laugh about life, or ourselves our buoyancy is restored. We are given a shot at dancing with, or at least clapping along with, the absurdity of life, instead of being squashed by it over and over again. It’s like singing on a boat during a terrible storm at sea. You can’t stop the raging storm, but singing can change the hearts and spirits of the people who are together on that ship.”
Thank you, Friends, for encouraging me to keep on writing. It does feed my soul to know that you are on my ship.
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