A long, long day. But in the parlance of my kind (the terminally ill), a long day beats a short day all to heck.
First, my life is blessed with a plethora of goddesses. Childhood friends, my daughter, sisters, my many new friends, nurses, phlebotomists, counselors, medical doctors. Men are great and I love a heap of them as well but this group of women has been my consistent go to for the tough stuff.
One goddess was in tow yesterday, my friend Sally: pals since the fifth grade. I am beginning to realize how beneficial it is to have company at these visits, after years and years of going it alone.
I had an appointment with the goddess who takes care of me from the neck up (as I like to say), Mary Susan Convery, my thoracic social worker. She keeps my head on straight.
A quick trip down Charles St for a hug from my daughter (Sally is her actual godmother) and a delicious lamb sandwich at Tatte. And then a long wait in those spaces appropriately called waiting rooms.
Oh, the irony. Those of us to whom time is so precious spend far too much of it waiting.
Anyway, the action got started around four with a visit from the head goddess, Alice. Chit chat about how I am feeling (great for the moment, on that artificial steroid high, my dyspnea temporarily under control.) But I was eager to cut to the chase—how about those scans? She had read them herself and her assessment was that they were mildly worse than the ones in December. Now remember this is while getting chemo so bummer. Of concern is the lymphangitic spread as well as the fact that the slight amount of fluid in the bottom of my left upper lobe is also increasing.
Alice puts more store in symptoms though and mine are not encouraging. Definite downward trend. So we agreed that I’d go ahead and get chemo one more time (and possibly two, depending on timing and tolerance) in the hope that it is at least slowing down progression.
There was a bright spot though and that was in the form of options. I figured we were down to one–lorlatinib plus a mek inhibitor. But Alice described yet another possibility. That after all these years on TKI-s it might be good to take a break. Maybe let my cancer forget some of what it has learned. To try a novel therapeutic, one my cancer is completely naive to.
While getting infused I signed the consent forms for a phase I clinical trial for a drug called DS-1062a; an antibody drug conjugate which targets a protein called trophoblast cell-surface antigen2 (TROP2), which is found in copious quantities on the surface of cancer cells.
This sounds exciting to me–a fresh possibility. But it is going to be intense. First there are the necessary hoops to jump through in order to qualify, including a lung biopsy, heart scan, ECHO, and eye exam. And all that blood, blood, blood (30 teaspoons for the first three cycles).
Every three week infusions but the first week, at least two additional visits. And then for the subsequent nine weeks, I return to the hospital once a week, with a second lung biopsy at week two. It is going to be consuming–that is, assuming I qualify.
But it also has given me fresh hope (I love the luxury of choices).
Good thing. Chemo may not be kicking cancer’s ass, but it is kicking mine. My liver is a tad inflamed–Alice asked me if alcohol might be involved. Truth? Yes. Goodbye to that for the time being. Sally filled me with healthy fluids last night and this morning she made me oatmeal, hot lemon water, and a vegetable chicken soup. I am in good and loving hands.
So yes. Stability or response would have been the preferred report but this feels if not a door, at least a window. And that’s what I need. Fresh air and a bit of a vista to contemplate.
xo
life and breath: outliving lung cancer 