Life is but a (school) bus

A friend recently wrote sharing news of her partial victory in a difficult divorce. I sensed a wariness in her tone, which suggested no one greet this bit of good news with too much enthusiasm. I responded to her:  

“In my experience of trauma and transition there are no big moments of closure, victory, or exultation. It is a process, tiring and winding, up and down, internal and external, non-linear. Sometimes others want to inject these artificial, wishful concepts – especially ‘closure.’ You are wise to quietly head off too much cheerleading from well-meaning friends and family who may not understand the ongoing nature of the process.”

This circuitous, unpredictable trajectory has been the theme of the past month for me. I was cruising along, maybe 95 percent done with my cancer treatment, when an ominous chest pain set in on February 1. A cascading series of medical mishaps and other setbacks put me in the hospital for the better part of the month (that’s just an expression, as Alder would say – it was actually the worse part of February).

As I noted in my last post, I was discharged from the hospital February 14 – which happened to be the date Alder and I were scheduled to leave Bainbridge and fly to Boston for a visit en route home to Juneau. We canceled the trip and the move and I laid low that weekend. By Monday I was relapsing, with spiking fevers and white blood counts. On Tuesday I was readmitted to the hospital – just hours after Rosie and my mom arrived to visit us for Rosie’s and Alder’s coinciding school breaks. My father flew back to Seattle to help referee the ongoing medical mayhem.

Hospitalization II, which lasted four days, was somehow lonelier than the first. An institutional mentality began to creep in; I began to see my days as lifeless stretches of time punctuated by the occasional meal and doctor visit. I developed an almost pathological horror of blood draws as my battered veins became increasingly elusive. I didn’t read. I watched a little Olympics on TV at night. I didn’t really want my kids to visit and see me a listless invalid in an antiseptic environment. I didn’t have much to say. I took fewer walks around the unit; it felt too tiring.

My doctors and I came to agree that the non-steroidal medications I was taking, in high doses and for a gut-threateningly long period, were not curing what ailed me. Another battery of tests (read: blood draws) revealed I had RSV, a respiratory virus probably acquired during Hospitalization I. My inflammatory markers – general measures of inflammation that don’t necessarily indicate the cause of the trouble – were higher than anyone could explain.

I finally started steroids, and saw immediate improvement. The downsides of steroids are the side effects – notably restlessness, moodiness, and over a longer term, bone density loss, potassium depletion and a moon-shaped face – along with the fact that symptoms often recur upon withdrawal. I am on a step-down dose over five weeks and hoping my body takes over as the steroids are withdrawn.

I’ve been out of the hospital for about 10 days now. My cardiologist last week said my heart looks good, and my oncologist is getting my cancer treatment back on track. She gave me a shot of Lupron in my hip to shut down ovarian function (and my hip function, it turned out). So along with steroid-induced madness I am bracing for a(nother) crash-course in menopause. Once we get menopause going, I’ll restart Letrozole, the aromatase inhibitor I need and loathe. Eventually I get to choose chemical (Lupron) versus surgical (oophorectomy) means for long-term menopause. Oh, the joys!  

My radiation oncologist has been pestering me to complete the last five radiation treatments, which I resumed today with some misgivings. Put bluntly, I believe my heart and lung issues may be radiation induced. There is a known, though low-incidence, causal link between radiation to the chest area and pericarditis. My radiation oncologist is dubious; radiation pericarditis generally shows up three to six months after treatment is finished, and I’m getting radiation to the right side while the heart is on the left. But each person’s “field” is different depending on the location of their tumors, and in my case the field is large and deep. I reported difficulty breathing the second week of radiation; I asked my doctor if this could be due to impacts of radiation on my lungs but she said no and I convinced myself I was being paranoid. I do have a tendency to read too much.  

Fortunately I have only the “boost” left, five treatments limited to the mastectomy scar area. The damaged scar tissue is less oxygenated than normal tissue and so takes up less radiation, according to my radiation oncologist. The extra radiation to the scar is meant to make up for that lowered uptake.  

Meantime, after eight months of giving over their home, my sister- and brother-in-law needed their house back. My father put on the full-court press for us to come to Boston where, he felt, I could get better medical care and support. I felt that after the mishaps of February, my doctors and I are chastened about my vulnerability and more vigilant about my care. Both kids are thriving and I don’t want to disrupt their tenuous and hard-won equanimity. Finally, the thought of moving across the country – away from this peaceful island into the honking-traffic nausea-inducing chaos of Boston – was entirely enervating. I am clearly, viscerally, no longer a city person. My father ultimately came to understand my decision, and following his advice I’ve found a good internist in Seattle to help guide my care in a more holistic way.

My engineer friend Rorie says, most people doing a project want three things: they want it done fast, they want it done well, and they want it done cheap. Pick any two, he says. And so it was with last week’s search for housing on Bainbridge: we wanted something fast, we wanted a short-term lease, we wanted to stay in the Ordway Elementary School bus boundary, we wanted furnished, and we wanted affordable. We were fortunate to find four of the five. But hey, it’s only money, and we’ve been spared untold expenses thanks to the generosity of John’s family and mine.

Alder and I will miss our old neighborhood. Every morning 15 kids with their coffee-toting adults and a smattering of over-excited dogs dribbled in from the driveways of our no-outlet neighborhood to wait for the school bus. I’ll miss the zombie walk, as Brian called it, and especially the zombies, who became kind-hearted and generous friends to us.

And we’ll miss Phil. Bus driver Phil said hello and goodbye to each child by name every day. He sang “Frosty the Golf Course” as they passed Meadowmeer on cold mornings. He set up a Superbowl contest. He regaled the kids with stories and songs and plied them with baseball cards and candy. He reminded Alder not to leap over the head of our neighbor Lucy, who would sit on the bottom stair getting off the bus. He assiduously recorded and reported the license plate of any driver who threatened our children’s safety.

You never know where the grace in your life will come from. Phil was a force of warmth and energy that fed Alder’s soul – and one of many people who has convinced me that there are infinite ways to make a difference in this world.

Orange blanket from Joy and painting by Rosie comforted me during Hosp. II.

Feeling happy, human and healthy again with Brian, my dad, my brother-in-law Chris and our friend Nu after Discharge II (pic by Therese).

Amy held my hand through last week's transitions and decisions.

Alder looking slick in our new kitchen.

Gratuitous self-involved photo.

We took advantage yesterday of a fleeting visit from the sun (I sheared Alder's 'fro shortly after this pic was taken).