If Only We Could Choose

An old woman with a cane walked out of the elevator on the second floor of the Perelman Center at HUP.  Her husband followed her out, then Jeff.  The man warned his wife, “Don’t go right!  That’s for blood cancer patients.  You don’t want to go there!  We’re pulmonary, this way.”

Jeff breezed past them, headed to the right and said, “If only we could choose.”

Both Jeff and our son Keith had doctor appointments yesterday in Philadelphia.  They had to endure the overcrowded regional rail – due to the Democratic National Convention and the rail car recall which resulted in a reduction in the number of trains running.  Keith arrived on time for his visit but Jeff was a little late for his appointment with Dr. Porter – a first!  Jeff’s blood was drawn as soon as he arrived at the crowded waiting area and he was called immediately to see Nurse Heather and Dr. Porter.

Nurse Heather praised Jeff for listening to the kidney specialist’s diet recommendations.  She also guessed that chasing granddaughters helps to keep him skinny.  Jeff shared pictures of his “5^th birthday party” – pictures of his donor, Nicole, and her family, our family, the granddaughters, all our happy guests on that happy day!

“Strange” and “puzzling” are not words you want to hear from your oncologist.  Dr. Porter is perplexed.  Jeff’s liver function numbers have been inching up marginally over time, thus the need to continue the immunosuppressant.  Dr. Porter asked questions about Jeff’s visit with Dr. Pat, the kidney specialist.  Jeff said he’d be seeing Dr. Pat the next day.

The trip to the city is always exhausting.  Jeff took a three-hour nap when he got home. 

At the last visit with Dr. Pat, she mentioned the possibility of needing a biopsy so I went along on today’s visit.  If you’re counting, that’s two doctor appointments in two days.  This visit was local, anyway.  Dr. Pat greeted us warmly although Jeff pointed out later that she shook my hand – and not his - then sat down at the computer to review and note the list of Jeff’s chemo drugs that I’d given her.   “Cytoxan,” she said.  “That’s hard on the kidneys.”  She then turned her chair around and rolled it forward until she was knee-to-knee with Jeff.  She invited me to bring my chair in close, too.  She said, “We have to talk.”

Jeff’s kidneys are about 70% effective, not bad for a man his age.  She explained the results of the many, many tests she ran on his blood and urine to check for all the possible reasons for his proteinuria.  All the numbers were “decent” except for the measure of protein in his urine, one of which was 4,000 times the normal amount.  “So, we need to do a biopsy,” she said.

She carefully explained the procedure which will be done at the hospital with an interventional radiologist.  I watched Jeff to see how he was taking this news.  He looked alternately distant and then very present with very pertinent questions.  He was quiet on the way home and went to bed for another nap.

While he slept, I texted the kids to ask them to call when they could.  I gave them the update and told them that their Dad and I both heard Dr. Pat describe “cells attacking cells” and asked her whether the issue with the kidneys could be – just as it is with the liver - Graft vs. Host Disease.  She said, “We will know after the biopsy.”

On a lighter note, Jeff keeps me laughing.  We’d gotten new cell phones this week and on his first call to me with his new phone, he was taken by surprise by my crystal clear voice.

“Hello,” I said.

“Uh, is this Amy?” he asked.

“Yes, this is your wife of 36 years.”

On his  second call with our new devices, despite selecting my picture from his contacts list, he was still unsure he’d gotten the right number.

“Hello,” I said.

Pause.  “Uh.  You.  You sound so sexy,” he said.

We didn’t know our old phones were so bad.  The new ones are Fun!  

Prayers, please, for Jeff and for our readers in Russia and France, presumably other MDS patients, who have been actively reading our blog in the last couple of weeks.