Trip, Interrupted

Wanda, resting for the evening at Sheldrake Point Winery (Ovid, New York)

Many of you following our journey over the past two years know that we made an impulsive decision last Summer and purchased a RV that was designed to give us travel freedom in and beyond Covid. About two weeks ago, we took to our RV and began a journey west to Michigan where we planned to connect with Abbey and Ted, spending a weekend at two vineyards along Lake Michigan.

The trip began with a stopover at Mount Holyoke where we spent some time catching up with Annie outside her dormitory during her final days as a lab researcher before she planned to drive back to Yarmouth. From there, we traveled south to Connecticut, stopping at familiar points in Fairfield County where we reconnected with some of our oldest friends. Catching up on the years, sharing photographs of (and laughs with) adult children, and learning about the most current “launch” plans were a lot of fun; and, for a few days, we were transported back to our earliest days married as we traversed familiar ground. Deb even engaged in a bit of a fashion show that brought her so much joy it still leaves me emotional.

We headed out through New York State, stopping first near the Massachusetts border where we had a rather amusing encounter with a local man who looked a bit like a character from a Western novel. When he heard that Deb was traveling as an ALS patient, he began a short attack on the limits of conventional medicine, demonstrating a considerable amount of cellular knowledge of ALS (even having met Pete Frates who originated the Ice Bucket Challenge) and discussing his familiarity with the progression of ALS and years studying at Harvard. He believed strongly in faith-healing as a practice, and he was venting frustration about his minister’s refusal to meet with a healer that this man had recommended for his treatment. I am not writing to comment on the practice, or the skills of the man he feels so strongly about, but it was quite interesting to have met such a man in such a place under such circumstances.

From Canaan, NY we traveled on to Lake Cayuga, once the windsurfing stomping grounds of Deb’s brother, Bill. We overnighted at a spectacular vineyard and winery and wheeled down to the lakeside from our hilltop parking spot to share the setting sun before returning to Wanda. With an ambitious drive ahead, we rose and pointed Wanda to Ohio and the town of Madison where we, again, spent a beautiful evening parked next to an open field enjoying the quiet and a brief rainstorm as we drifted off to sleep. The following morning, the proverbial wheels came off the camper.

At 10:30, while we were getting ready to head over to Dearborn, Michigan, things were not quite right. We couldn’t get moving with our normal speed, and Deb was struggling so I called 911 and asked for EMT support. After arriving, finding Deb subdued but not in crisis, they assessed the situation and asked if we wanted to continue our journey or go to an ER for observation. I chose the latter option, and we began a descent into medical diagnosis that landed Deb in Cleveland Medical Center 36 hours later on Thursday night for emergency surgery to address a perforated colon that was discovered in the Geneva Medical Center, a community hospital associated with Case Western Medical School. We were very lucky in our choice of destinations for that first ambulance ride as our rural location could have sent us in any number of directions including the choice to keep driving. The team in Geneva was magnificent, and Deb's nurse, Jenn, placed a purple surgical mask on her for the 90-minute ride into Cleveland.

Dr. Emily Steinhagen operated on Deb and met Abbey, Ted, and me after surgery outside the ICU around 11:30 that evening. She was accompanied in the operating room by Dr. Raymond Onders, a world-renowned expert on diaphragmatic pacing who became known as the doctor who saved Superman when he intervened several decades ago with Christopher Reeves’ care. He also recently received federal emergency authorization to implant his devices in several hundred Covid patients, enabling the vast majority of them to get off ventilators and return home. So his presence was very fortuitous as we tackled this perilous condition. His diaphragm electrodes pulse across a monitor above Deb’s bed every few seconds, adding some encouragement to the largest muscle she needs to breathe.

I don’t think we have been so scared and faced down so many consequential decisions in such a compressed period of time. I will leave the post-game analysis for another time, but any random sample of people would yield a wide range of reactions to how to administer high-risk treatment to a person with a grave underlying condition. General anesthesia should always be avoided in an advanced stage of ALS, so too should any conditions that threaten pneumonia, blood clots, challenges to breathing capacity or simply time in bed and not using valuable muscles. We took the measure of our medical team: some were comfortable in a palliative mode “letting nature take its course” while others were somewhat more data-driven and discussed the likely outcomes of surgery and how we would address Deb’s care if the stress of the procedure impacted her symptom progression. The first group, verbalizing those options, were sharp and difficult to hear while the latter group left a sense of vertigo rather than resolution. In the end, as the papers were being signed, Deb and I were united and resolute.

We have been immersed in these “What if?” discussions for several months, it is part of ALS, but we don’t enjoy them. They are hard, and they always leave you with a level of anxiety that can only be counterbalanced by understanding WHY you are choosing a particular course of treatment. As the expression goes: “Having a WHY can help you endure any kind of HOW.”. And we believe that completely. We chose the surgery, knowing that an untreated, perforated colon could lead to sepsis and certain suffering. We have come this far fighting off a single menacing adversary to not cashier our time at the blackjack table while we still held a decent hand. The recovery from the colorectal surgery looks good; the respiratory progress has been, is, and always will be the determining factor. Deb is here for others, and she is in the battle to live that example. As she sleeps next to me, I feel incredibly blessed.

Right now, Deb is recovering in the ICU. Because Cleveland Medical Center is one of two trauma hospitals here, some of our ICU neighbors are the victims of tragic societal dysfunction that can make you sad thinking about the circumstances that placed them in such a critical condition. It is an amazing place and the doctors and nurses and respiratory therapists of University Hospital - Cleveland Medical Center have been incredible and warm in their care of Deb. It is heartwarming to see the residents and fellows stream into and out of the room, knowing that they are moving into a profession we so valuably need. We are making slow but steady progress, and we are ever-grateful for your wishes, your prayers, and your written/texted support. Deb is an endearing patient here and is making many new friends on the floor with her determination, candor, and subtle humor as she communicates among a tangle of probes, tubes, and monitors. We will try to update our progress in the coming days and weeks.

It may be some time before we can respond, but do not hesitate to be in touch through this blog or in a private note. It means a tremendous amount to both of us. We are so grateful for the support of our kids and the contact we enjoy with our siblings as we travel down this road.