March 18

It’s 4pm and I’m sitting here at the Palo Alto Medical Foundation Urgent Care facility. 

Dad woke up with a very painful headache around noon. When he mentioned it to Hunter at 2:30pm, we immediately took him into Urgent Care. Until this point, dad has complained of pain only twice since his discharge. Once after a 4 mile walk, and once after he fell and hit his head last week. His pain today was located on the right side of his forehead, and moved down his right cheek as the day progressed. He labeled it as a 8-9+ level of pain on the universal pain scale from 1-10. I don’t recall him at a 9 once since he was diagnosed in December. Does it need to be said? I’m concerned. Dad is currently feeling nauseous and vomited a few moments ago. 

The Urgent Care team spoke with Dr. Schiffner, dad’s radiation oncologist, who recommended they give dad 4mg of decadron (steroid) ASAP. From the sound of it, Dr. Schiffner interprets dad’s intense headache as a response to brain swelling. Perhaps the careful balance of decreasing steroid and keeping his brain inflammation down has gone out of whack. His steroid dosage has increased for the moment, and we will decrease the dosage more slowly next time (how to decrease more slowly I’m not sure.. We’ve been at 2mg for 2 weeks now, and before that we were at 4mg for a good week). Something to keep in mind is a note from Schiffner: He mentioned that dad will ideally go off the steroid, but the fact that he’s on it now does not mean anything’s wrong. 

Now at 4:30, dad’s pain is at a 7/8, and he’s in a restive sleep. Light snoring and twitching – the usual. 

At 5:40, the Urgent Care doctor says we’re okay to head home. We are now working on discharge – Dad’s “grooving with that plan” (his words). 

The last few days have not been the best for dad. He’s wholly exhausted, and has been spending most days sleeping. He fell twice on Sunday. When he fell for the first time in the bathroom, he didn’t mention it to us until later that evening. When he fell the second time, he was on his way to bed for the evening. Unfortunately he cut his left arm pretty bad, and was bleeding. I doctored his cut, and tucked him into bed. 

Monday morning, mom, dad, and Hunter headed to UCSF for a second opinion with the UCSF neurology oncology department. I was unable to make it to this appointment due to a work commitment, but will relay the information that was passed my way. The short of it: we won’t be fiddling with dad’s treatment at the moment, as he is responding well to the current treatment path. Upon recurrence, we will seek out additional treatments. From the sound of it, why meddle with the treatment course if it’s working? 

Dad spent the rest of Monday afternoon sleeping. Hunter and I went on a warm and sunny hike, and spent the time processing all that’s going on. When we got home, dad was still sleeping. Though he spent the day in bed, he said he was “in for the night” – aka no dinner for him. 

Moving with the flow, we’re resting and hoping for more energy and less pain in the upcoming days. 

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