Man on Wire

There's this little journal I carry around with me everywhere I go. Or at least I did. Originally I recorded all the overwhelming information that Dr. Kossman gave us at each and every visit- from the initial diagnosis, to the details of the chemotherapy on through to each hospitalization and follow up visit. Over time it has evolved to include consultations, phone calls, CT and MRI results, lab reports and what read like nursing notes regarding his intake/output, blood sugars, and assorted minutiae. Anything and everything I might need to remember or refer to has been written down "for the record".

I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.

Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.

For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.

This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.

Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.

Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.

The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.