Several people have asked how Rich is doing and how his trip to Nashville went this week. I wish I could tell you that we had some sort of revelation, but it was a lot of the same.
He got up at 3:30am so he could get on a flight at 5:35am to Atlanta for his plane to get replaced and arrive in Nashville late. He hustled to his appointment to find out that he’s lost 15 pounds in the last month from not eating. He talked with the nurse practitioner Holly because Dr. Bendell wasn’t in the office that day. Holly had no answers for Rich and her hypotheses were odd at best.
He delivered the Excel sheet and list of questions I had created so that Dr. Bendell could reply to me via email. He got his Benadryl. He got his immunotherapy treatment. He took an Uber back to the airport. He landed at 11:30pm. Long day.
In an attempt to make sense of the last few weeks I had created a spreadsheet of each day, Rich’s food intake, oxycodone intake, fever, hiccups, larynx spasms, bowel movements, and overall health. I then had a list of questions for Dr. Bendell that included things like
- Why did the hospital give Rich antibiotics if his white blood cell count (WBC) wasn’t high? Were they just throwing things at him and guessing?
- How did Rich have diarrhea after taking 12 oxycodone for two days in a row? He shouldn’t poop for a month after that.
- If the antibiotics were pointless, what actually made him better in the hospital?
- What do we do the next time he doesn’t eat for a week?
Dr. Bendell’s answers were brief but informative. She believes (and I concur) that Rich had another obstruction. It made his large bowels not work properly so that only liquid could get past the blockage. It also inhibited the large bowels from doing their job of removing water. She agreed that the hospital had no idea what to do with Rich so they just gave him an assload of antibiotics just in case it helped but there was no real reason for it. And even with 12 oxycodone a day, you can still have liquid bowel movements if that’s all that can get through your bowels and if they’re not working properly. He got better simply from being rehydrated and resting his bowels by not eating. And if he gets to a point he can’t eat again, we could explore TPN again or see if he recovers enough to start eating again like he has now.
The pattern, as much as there is one, is that Rich has had obstructions every 4-6 weeks. Late July, late August, and mid-October. So the plan now, as much as there is one, is to get as much weight back on Rich as possible so that the next obstruction that keeps him from eating won’t make him even skinnier or malnourished.
There is no “aha” moment that explains everything, but it does make sense. And there is no magic bullet. We just keep getting immunotherapy treatment, keep eating and drinking, and do our best. We will continue to hit obstructions along the way but we will keep finding ways around them.