Fall has arrived, carried on the sharp wash of cool air streaming through the open window in the morning. I wish I could push it back, force the leaves to turn green again, and will summer to stay in place. Time is not our friend, and the change of seasons is yet again a reminder of the puniness of human desire to bend the world to our bidding.
Continue reading The Exquisite and Fragile Joy of Life in Uncertainty
Colin has had a wonderful summer and really relished being at home. Most significantly, he has enjoyed a renaissance of himself: he is engaged, motivated, curious and vibrant. If Colin finds an adult to buttonhole in a conversation, his engine will start and keep going. On our return from Memphis, he consumed the entire flight from Philadelphia to Ithaca regaling a new friend on a variety of subjects. The real resurgence started shortly after leaving Memphis and has only continued since then.
Colin lies down on the table, head nestled in a custom head rest that still contains long strands of the hair we had to cut off a week before. I help him settle into his spot, but he knows the drill better than I do. I straighten his head and the tech puts the mask in place. He closes his eyes under the plastic mesh without complaint and she rotates clips that keep it in firmly in place during treatment. They show me how they line him up, red lines crossing to match pen marks on his skin that they redraw over small tattooed dots and lines on the chin of the mask.
Clouds ascend like sculptures, backlit by the setting sun. Wispy pink columns stand in dramatic array, the clump on top of one stack embellished with a viciously straight contrail that angles upward like a laser beaming from a cyclopean eye. It is a tiny thing but still audacious enough to pitch a galactic battle against an unseen enemy. The day closes over the Mississippi, with stormheads threatening their bounty of rain from the south. Colin and I have left the gentle wash of music and companionship of old friends on Mud Island, a sanctuary of gentile life only a stone’s throw from the urban grittiness that awaits patiently on the east shore of the mighty river.
Continue reading Same as it Never Was
Going into surgery, we knew that we would learn valuable information that would drive treatment decisions. The surgery itself promised to be rather ho-hum, endoscopically performed through either one or two holes, and resulting in a very modest recovery time. The anxiety wasn’t about the procedure itself but the findings. Continue reading Declaration and Decisions
The day before neurosurgery is a frustrating combination of interminable waiting punctuated by the frantic urgency to act, all conducted without benefit of even the vaguest structure. It stands in sharp contrast to the dense scheduling of one of our typical days at St. Jude, spent shuttling from one meticulously scheduled slot to another (minus E Clinic, the clinic for brain tumor patients, which is beholden to no clock born of human devising), and it is endemic of the inpatient environment we have encountered at any hospital. Already in the system, it is a simple matter to add another test or procedure through hidden incantations conducted in the obscurity of the famed work room. However, this comes with a price; upon admission, the patient becomes the sworn legal property of the hospital and therefore liege to its whims of timing. Continue reading Memphis Sunrise
I realized, after finishing the last very long post, that I didn’t actually go into my originally planned description of the Augusta trip. However, I began writing it in the days leading up to the second on-treatment scan. In the gap between working on it furiously on the plane en route to Memphis and being able to return to it, the scan itself took place. With a lot of anxiety around this milestone, Dr. Gajjar was quite careful in showing me two areas on the spine that might be of potential concern and that he had brought up with the radiologists. These were nothing worrisome, one being clearly a blood vessel (even to me), but he wanted to make sure I saw them before I went on my merry way. With some relief, we started disseminating the news of the all-clear and Colin and I returned to the Tri Delta House to relax before dinner with friends. However, the phone rang in our room and I was met with the familiar voice of Katie, a nurse who had taken care of Colin often when he had inpatient and now works in the brain tumor clinic. We needed to return to the hospital, which meant only one thing.
Continue reading Progress(ion) Report
Tomorrow morning, Colin and I return to Ithaca. A follow-up MRI today showed no residual tumor or suspicious areas: our first honest-to-goodness gross total resection.
His recovery has been nothing short of astounding. After walking out of the ICU 24 hours after entering it, they were ready to discharge him except he needed to start a medicine to prevent clots while in the hospital.
The wait on surgeries is a notorious combination of boredom and anxiety, though Dr. Boop significantly diminished the latter with his early morning announcement that the procedure would be much simpler than planned. Fortified with snacks and ample access to the internet, we were prepared for the long haul, but only an hour after we got the call that they had opened we got another call that Dr. Boop was scrubbing out and ready to talk to us.
Continue reading Post-Op Update
These past few years, we have done a poor job in updating on Colin and his progress. Though I can’t completely escape guilt on this point, I am happy to report that the reason is that we have all been busy with normal life and that he has been improving steadily. We moved to Ithaca, the boys have been going to the same elementary school together, and we all enjoy living in a neighborhood that is full of kids and friends.