Sometimes things move at a snail’s pace. Sometimes they happen all at once. On Monday, June 5, my gastroenterologist called me up and told me he was arranging a hospital stay for me. That day, if the hospital had a room available. I had been taking oral prednisone to calm the ulcerative colitis, but I was not thriving. He wanted to move to steroid infusions, requiring a hospital setting. It was an interesting week.
But first, here’s my health roundup.
Treating the colitis is still at the front of the queue. I responded to the infused steroid, but backslid when I returned home and resumed oral prednisone. I will likely start another drug treatment this next week: infliximab.
Biopsy results from the colonoscopy. Fortunately, the biopsies revealed no conditions other than ulcerative colitis.
And the cancer? No more immunotherapy! Hurrah. I was supposed to receive my final infusion on June 9, but the colitis got in the way. My most recent scan for cancer indicates that the cancer is in remission, but I will be managing melanoma for the rest of my life. Because melanoma can attach itself to any mucosal surface, a risk of recurrence will always be with me. I’ll meet soon with my oncologist to schedule my end-of-treatment scan and plans going forward. This planning exercise is fraught for me, since certainty and predictions really don’t go together.
Path to direct admittance
I’ve entered the hospital system at two extremes: ER visits and planned procedures. This latest hospital visit was the first time I experienced “direct admit.” It was by far the easiest method, transpiring over about an hour:
Gastroenterologist called to alert me of his plan.
Gastroenterologist’s office called to tell me to expect a call from the hospital.
Hospital called to say my room was ready and I could check in at the main entrance.
At the hospital lobby, I filled out a few online forms and then reported to the nurses’ station on the 7th floor. No wheelchair required.
Caregivers
Yes, hospital personnel are doing a job. Still, I am struck with their compassion. From the doctors to the nurses and tech aides, food servers, and cleaning staff, everyone was kind and efficient. Engaging in small talk often yielded interesting insights.
More than a few who worked nights volunteered that while they enjoyed the night shift, juggling their daytime routine with young children was quite tiring. When Chris and I were raising our boys, I took a break from paying work for 5 years. I was bone tired then as a 30-something-year-old. I’m bone tired now just imagining working — nights — and raising a family.
I met quite a few traveling nurses who sign up for 3-month stints. They receive a stipend for housing but need to secure their own living arrangements. Austin seems like a tough location in that regard due to our out-of-whack cost of living. The nurses who liked the gig were younger and unattached to homes, children, etc. I could see my younger self in that role, except for the blood and needles part.
The 4am phlebotomist visit was always a treat. Kidding. To prepare for the shock, I learned to awaken myself and turn on a light before they entered to draw blood. On a positive note, they work quickly and cause a minimum of pain.
My gastroenterologist coordinated with his staff and the hospital doctor, so that at least two doctors visited me daily. I always had questions but never felt rushed in getting answers. After discharge, I also appreciated their coordinating with my oncologist and primary care physician to keep everyone on the same treatment page. I cannot overstate the importance of clear, accurate communication:
Fiber is not my friend these days
Managing my diet is a big component of treating this disease. While food does not cause colitis, certain foods — especially those high in insoluble fiber — can aggravate the condition. Bummer. Just when I was getting really comfortable with my new high-fiber diet:
Today my diet is more along these lines:
Fortunately, I have the excellent cook and friend of the blog Gloria in my corner. Think peanut sauce on penne with roasted chicken.
AWOL
I was on a trauma ward for patients recovering from accidents. I was probably more mobile than most as I didn’t see too many patients moving around on the floor. I had an IV for the steroid infusion, but was not attached to monitors. Nor was I receiving fluids. This meant that I could move around the floor freely. Still, I longed for more freedom. Could Chris and I take walks outside the hospital? Yes, as long as I let my nurse know my whereabouts.
One day we slipped out without telling anyone. I had jotted my phone number on the white board in my room. What could go wrong? That happened to be the day when one of the doctors came looking for me. After an intercom message on the floor didn’t raise me, a tech assistant searched the grounds and hauled us back in. Somewhat chastening, but I stand by exercising my autonomy.
Hospitals enforce a strict no-smoking policy
On one of our floor walks, Chris asked a nurse where the smoking section was. The patient really needed a smoke break. She didn’t miss a beat as she smiled and tut-tutted him. For the record, I don’t smoke and never have been a smoker. Growing up with extended family smokers in the 60s and 70s was enough for me to seriously question smoking’s allure.
Watching Succession alone and in the dark was not wise
My iPad got me through the week. Reading, music, Duolingo, podcasts, streaming movies and shows. Technology is really kind of a miracle. I was unprepared, though, for the effect that the show Succession would have on my delicate emotional constitution. One evening I continued watching after Chris left and felt myself becoming more and more uncomfortable. I turned off the show, switched on the light, and read some legal articles to ground myself. Highly recommend Lawfare. A non-law fave is the City Nerd YouTube channel. He’s my transportation soulmate who reminds me that I’m not alone in my revulsion of stroads. My dear cousin Nancy has also stepped in to send me the Anne of Green Gables DVD set. I’m looking forward to some uplifting and uncomplicated entertainment.
Steroids are strong drugs
I have been taking a steroid of one form or another since early May. My notable side effects include swelling in my ankles and feet and muscle weakness. The swelling is annoying but not debilitating. The muscle weakness is not fun. I’m used to bounding through my house and garden, taking care of business. One day I noticed that my legs and arms were not working right. I experienced a general uncoordinated feeling, as though I was just learning how to walk. A quick google search confirmed myopathy as a side effect of the prednisone. Countering this side effect is physical activity. Fortunately my garden and Bun are built-in treatments!
Normalcy?
As a sign of my desperate times, I had to cancel my hair appointment in early May. I believe this is the first time in my life I have been forced to do so. Last week I rescheduled the appointment for Monday, July 3. I could not be happier.
Another hot week in Texas
Be careful, y’all. As reader Bev noted in another post, this heat is no joke.
Some Bunny ASMR
ASMR stands for autonomous sensory meridian response:
a tingling sensation that usually begins on the scalp and moves down the back of the neck and upper spine.
Remember to turn up the volume if you like this sort of thing.
Newport?!? This finally explains all the cigarette butts behind the chicken coop.
You’re no doubt their favorite patient. Communicative, appreciative, and cooperative except for the sneaking out part.