As Though Everything is Possible

We’re moving to Rhode Island so that I can start my PhD program. This seems ill advised as I have just gotten the last set of new information from the doctors. My chemotherapy seems not to be shifting my disease activity much—white blood counts haven’t decreased, inflammation isn’t down, there’s still chest pain. I am bloating from the medications, only two pairs of pants fit anymore. I am getting the facial rash and bumps on the chest, and last week’s chemo was tougher than any past treatment; it took me almost five days to recover enough to get out of the house. This because we’ve nearly doubled the dose in the hopes of pushing my disease into a restive state.

So why Rhode Island now? Why are we arranging moving trucks, starting the sorting of stuff into boxes, shampooing the rug in our rental home?

I told my mom this last night: I have to live as though everything is possible.

Since being diagnosed at the age of 23, I have had days I could not walk, I could not zip zippers and button buttons, hold a glass, I have had countless hospital stays, been in two comas, contracted flesh eating bacteria and given a 20% chance of survival, I have had 16 surgeries, and now I have a new set of organ involvement concerns with this old heart of mine. This year began with a swollen heart, a murmur, the inflammation of the lining of my heart and a crazy day when I gasped for air and clutched my chest, reassuring Patricia I was not having a heart attack but doubting my own assurances.

Also since the age of 23, I have spent amazing cold months in Chiapas, hiking the hills, watching as El Sup marched into San Cris with thousands of indigenous, taking over the city, I have rested for an afternoon at the top of the Pyramid of the Sun in Palenque, I have seen my little sister make it to the state cheerleading championships and sat at the UNM Pit among the proud parents, my dad tapping his foot to the music with his Albuquerque Bulldogs t-shirt, I have eaten four kinds of mashed potatoes in one sitting, I have collected sand dollars at night at Santa Cruz, when Patricia first stood at the Pacific Ocean, I have taught at the Indian college where a young girl said to me “Andrew Jackson—he’s, like… our Hitler,” I have received my BA, my MA, I have fallen in love, I have talked about having children, I have danced for hours to gospel house with my big sister, I have lived as though everything is possible.

Last week the NIH study revealed some new findings. One of my many tests was a transesophageal echocardiography (TEE), which is an ultrasound of the heart obtained by passing a small tube with an ultrasound probe into your esophagus. It was only slightly uncomfortable and allowed me an afternoon of Versed haze. The tests, along with some others were looking for Valvular Heart Disease (hardening, small growths, or leakage of the heart valves). Unexpectedly, my left valve showed vegetation, something that is unique to Lupus patients. These vegetations can be dangerous if they dislodge and are the focus of the NIH study.

The research docs believe the vegetations—something like tiny seaweed-like scar tissue—may be a cause of Neuropsychiatric Systemic Lupus Erythematosus (NPSLE). NPSLE includes stroke, transient ischemic attack (temporary or mini-stroke), disorientation, decreased level of awareness and thinking, seizures, and irrational behavior. The hardening, small growths, or leakage of the heart valves that are commonly seen in patients with SLE may lead to the formation of tiny clots in the heart valves which then may dislodge and travel to the brain and cause brain damage.

So weirdly, here I am at the age of 35, ancient for a Lupus patient with my degree of disease activity, now being told there’s some new little hidden dangerous thing in my left heart valve. I am left to take my daily aspirin and envision that vegetation grasping at the walls of the valve, welded to the wall, not dislodging, never dislodging, clinging stubbornly to the wall for decades, refusing the warm streaming blood year after year.

Every deep breath for the last week has felt like a risk, laughing loudly as I do, a gamble. I tell my mom that the danger isn’t in moving, the danger isn’t living in Rhode Island. The danger is living in my body.