Our last update was on May 20, just before Mihály and I left South Carolina to travel and visit friends in Texas. Our plan was to enjoy the good music, food and camaraderie to be found at the Kerrville Folk Festival as Mihály further contemplated important decisions about treatment options and medical care and how and where he could find a peaceful place to call home.
I can’t express thanks enough for the very significant and meaningful generosity of friends from Charleston, Texas, across the country and around the world who helped finance our trip!
Uneventful Journey with a Big Bump at the End
By car, the trip from Charleston to Kerrville totaled more than 24 hours of driving before we arrived to stumble exhausted into the welcoming arms of loving family at Quiet Valley Ranch. We set up a shared campsite among healers and kind new friends, within view and just a short downhill walk away from flush toilets, hot showers, and First Aid. I volunteered as a “Kerrtesy Cart” driver in exchange for free admission and camping, and Mihály enjoyed free admission as a comped guest of my volunteer crew leaders.
The day after we arrived, I hit a massive pothole turning into a gas station and broke an axle on my car. The gas station is part of widespread local family-owned franchise, and although there were several stressful moments, angry threats made to me, and more than a little shadiness, they ultimately did the right thing and paid for towing and repairs, including a new tire. We laughed but were grateful to see within two days the company had also paved in ALL of the potholes to every entrance to that gas station!
Camp Life on Quiet Valley Ranch
After the long drive, we were both tired and little dehydrated. Mihály’s arms and legs were causing him pain, specifically hardening veins in his arms and legs, a lingering side-effect of chemotherapy. He spent several days taking it easy, sitting enjoying the view from camp or riding through the bustling 20-acre campground as a grinning (sometimes grimacing!) Kerrtesy Cart passenger. The weather was hot, but nothing like the humidity and triple-digit temperatures happening in Charleston that week.
Going into our second week at the ranch, Mihály awoke one morning with his left leg swollen to nearly twice normal size. I searched around town for pressure tights and we used those, plus ice, elevation and an herbal anti-inflammatory, to combat the edema. The swelling was almost gone after five days, but Mihály was still in a lot of pain, so we focused on hydration, combatting lack of appetite, and a more disciplined pain management regimen.
Mihály spent most of his time in camp, resting, and so did I, tending to him and keeping the ice cooler stocked. We didn’t get out and about to see much music, but enjoyed the magic of the music that wafted through and near our camp. Hands-on healers of all stripes – energy workers, nurses, medics, massage therapists – assisted generously with their time, energy, advice, prayers and support, and we are so grateful for our family of friends old and new!
When it Rains, It Pours
The very last day of the Kerrville Folk Festival was Sunday, June 9. After a couple thunderstorms and a few cool days earlier in the week, that weekend was sweltering, with the heat index (I heard) reaching 108°F! Mihály spent several hours Saturday night and Sunday afternoon cooling off in the AC at First Aid, but when he vomited tell-tale “coffee grounds” (indicating blood) Sunday evening, we followed the medic’s advice and immediately went to the emergency room.
While we were in the ER, the skies outside turned dark with weird green light and the wind whipped from every direction, threatening tornadoes. The hospital never lost power, but 16 miles south back at the ranch, dangerous lightning and hail had everyone ducking for cover while the last main stage performance of KFF 2019 was cancelled after the opening act.
At the hospital, blood tests indicated sepsis and a CT scan showed fluid collecting in Mihály’s stomach. He was given plenty of IV saline, antibiotics, morphine for pain and protonics for stomach bleeding.
In and Out of ICU
After eight hours waiting in the ER, Mihály was admitted to ICU in the middle of the night. By 7:30 a.m., the new doctor on shift came by to order an endoscopy. We waited all day, Mihály on an ice-chip fast since the day before, until he finally got the procedure at 6:00 p.m.
The gastroenterologist shared images and explained that the bleeding was from an irritated esophagus; the irritation was from acid reflux of the fluid in the stomach, and the fluid was not emptying properly because a tumor is pushing against part of the intestines, constricting the pathway.
He recommended a liquid diet and/or a feeding tube, with discussion of a possible stent. It was already past the end of his day*, so the doctor said he’d come by sometime the next morning to talk about a liquid diet, and left me to explain the situation to Mihály, who was coming out of anesthesia. (*Apparently this doctor had been called in at the last minute when the ICU team realized that no one had actually made a call to a gastroenterologist all day, and he acted like he was already doing us a favor by not delaying the endoscopy until the next morning.)
Uncomfortably attached to four intravenous tubes and a half-dozen electrodes, frustrated at not being able to move freely (especially just as he’d been recovering from the edema in his leg), and fairly h’angry for having not eaten in nearly two days, Mihály was very distressed at the news of another night in the hospital. We asked the nurse if the doctor had given any orders regarding liquid nutrition that night, and there were none. Mihály made the decision to discharge from the hospital “against medical advice.”
Landing in Llano: Home Hospice in the Hill Country
For the past week, we’ve been the grateful guests of kind friends who’ve provided us with a private and comfortable space in an air-conditioned camper trailer on their rural property just outside the small town of Llano, Texas. We’re far from the sounds of traffic and sirens, but just a few miles from town. Situated among fields of wildflowers, mesquite and live oak trees, listening to the mockingbirds, we enjoy breathtaking sunrise and sunset views of the surrounding limestone hills.
While here, Mihály has enrolled in home hospice with a local group, and so far they have been wonderfully helpful, with daily visits and a personalized regimen of medicine to manage pain and nausea and promote digestion. Although still struggling with leg edema (but now taking medicine for it), Mihály has not vomited since he was in the hospital, and more exciting, has begun eating solid foods in increasingly greater quantities every day since enrolling in hospice!
For now, our collective goal is to get Mihály feeling comfortable and strong enough to make the long trip back home.
We’ve been in touch with Mihály’s PCP back in South Carolina, who is a genuinely compassionate and caring individual. The doctor said he’d help by contacting the home health services Mihály previously used during chemo, and the hospice team in Texas assures us that it will be very easy to transfer care to South Carolina.
The only thing missing from the plan is a stable, clean and safe destination in South Carolina, but we’re working on it while continuing to tackle one day at a time.
This past month, our travel expenses were covered by an array of amazing angels (and one dear childhood friend in particular) who truly understand how meaningful and needed it was for us to reconnect with our tribe in Texas! We did encounter several hundred dollars of unexpected expenses for medical supplies and palliative incidentals, and continue to gratefully accept any support we are blessed with.
Don't Wait - Reach Out!
Please send Mihály your love. He can be texted or called at 843-642-0765 (don't be discouraged if he doesn't answer; the spam calls are out of control), e-mailed at gmail (harokenku), or you can send a note in the mail to PO Box 1068, Ladson, SC 29456. Unfortunately, although I post on Facebook and tag his profile in order to keep his friends informed, he does not actually have access to his profile or to the associated e-mail account, so any messages you try to send via Facebook will not be seen.