We planned to be on the road by 7:30 a.m. so Jeff had to take his pills earlier than usual. After breakfast he dumped his eight morning pills on the kitchen table, poured a glass of water, straightened himself in the chair, folded his hands in his lap and set his jaw. I laughed because it looked like he was facing off with an intimidating nemesis. He said it is like training for a pie-eating contest.
When we got to the Perelman Center garage, we were surprised to see the entrance unmanned. Without a guard to ask us whether we had business at the Perelman Center, it seemed as though they would let any ol’ riff raff in, not just members of the Cancer Club. Oh, but then we saw him, down below in the relative warmth of the garage instead of out at the street. “Can you tell me your business here?” Ah, yes, there we go…
After our coffee and hot chocolate at Gia Pronto in the lobby, we headed over to the Ravdin building to pick up the last 14 Tacrolimus pills in .25 mg strength. Our local pharmacy doesn’t have this strength; HUP makes them in a giant red capsule. Jeff is on the penultimate dosage in the weaning regimen.
Then we went back to the Perelman Center to meet Dr. Lee. Jeff had a strong desire to perform well on Dr. Lee’s final exercise assessment. On the six-minute walking test, Jeff bested his pre-transplant performance by at least half a lap, doing 18.75 laps of 100 feet each. Although this was done in a quiet hallway, a woman in strappy high heels walked in front of Jeff during the test and made no attempt to stay out of his way. She stopped in front of one of the end cones that Jeff was trying to circle. He had been instructed not to speak to anyone during the test and to pass anyone who might come by. This woman was making it very difficult! When she stopped in front of the cone (what did she think the cones and Dr. Lee’s stopwatch were for?!), I asked her to “Watch!” She said she was lost and wandered off again. I could tell by Jeff’s pace and the vigor in his step that he was MAD! He was breathing audibly and started to drag his feet a little bit. When we go for walks, feet-dragging is my indicator that it’s time to head home. Anyway, he probably performed better because he felt he had to make up for lost time.
Two of Dr. Lee’s assessments were video recorded: the stand/sit 10 times test and the stand/walk-20-feet/sit test. One test was to walk 20 feet “as though you are walking to the store.” Jeff asked, “Should I walk quickly?” Dr. Lee said, “That’s all I can tell you – as though you are walking to the store.” When Jeff performed well, I decided he was pretending to go to the ice cream store. He said, “Or the store sells trains.”
There were some balance tests such as standing on one foot for 30 seconds, grip measurements were taken on both hands and, lastly, Dr. Lee and Jeff went into a nearby bathroom for some skin-fold measurements. Jeff said he was so sweaty from exertion that he had trouble getting his T-shirt off. When he sat next to me to complete the survey portion of Dr. Lee’s study, I stroked his neck and face and found his skin cold; his sweat had done a good job of cooling him off. His heart pumped hard for quite awhile. Dr. Lee knew Jeff’s appointment with Dr. Porter was next, so he had us finish the survey in the waiting room of Dr. Porter’s office.
The surveys are Jeff’s least favorite part of the study. There are several standard questionnaires on topics such as fatigue and pain, anxiety and depression, body image, and functional activity. He answered the questions for the last 24 hours, the last 7 days, the last four weeks, on various rating scales - 0-4, never to always, 1-10, a little to a lot of the time.
After the many, many pages were completed, Jeff and Dr. Lee discussed the ways in which this study will help future BMT patients such as designing PT interventions at particular key points of recovery and, of course, identifying areas for future study. Dr. Lee reminded Jeff that he is entitled to see the results (those related to him, anyway) when the study is final. We wished Dr. Lee “Good Luck!”
We waited another hour. Finally, Jeff’s name was called. Dr. Porter’s nurse weighed Jeff. He lost another five pounds and had “grown” an inch. He is back to his full 6’, thanks to his good recovery and improved posture. Meanwhile, I went down the hallway towards Exam Room #21 and met Jackie, the nurse practitioner, along the way. She lit up when she saw me and asked, “How is he? How was Oktoberfest?” I told her he is doing well but Oktoberfest hadn’t happened yet. I asked whether it will be safe for him to go to such a crowded event with hundreds of people so close together. She said, “He’s fine! Go to Oktoberfest and have a good time!” While I waited in the exam room, Jackie popped her head into the nurse’s station to tell Jeff that we had spoken and he was cleared to go to Oktoberfest. Jeff informed her that he’d intended to go anyway, with or without permission. Then he asked her to come see him in the exam room; he had something to give her. Jeff and Jackie joined me in the exam room and Jeff presented Jackie with the wooden spoon he made for her. The top looks like a syringe. She asked, “You made this?!” Yes. She gave him hugs and kisses.
We had another long wait in the exam room and we began to worry whether we’d get downstairs to Radiology in time for his 1 p.m. appointment to have the Hickman catheter removed. I went out to the reception desk to ask whether someone could call Radiology and let them know we were running late. The receptionist checked the schedule on her computer and said that Dr. Porter was with a new patient and would be in to see Jeff “very, very soon.” I knew Jeff could wait patiently if he heard that a new patient was being seen. How glad we both are to be on this side of his BMT. By the time I returned to the exam room, Dr. Porter was there and they had already reviewed Jeff’s meds. Dr. Porter teased, “Where have you been? Jeff says you’re the one with all the questions.” In an excited, delighted voice, Jeff said, “Guess what? I won’t need blood work except when I come here!” What?! Of all the scenarios we’d imagined, we never considered that his twice weekly blood draws would stop! The Penn Home Infusion nurses thought that Jeff would need to go to a lab for his twice weekly Tacrolimus levels (and other labs) once his Hickman catheter was removed and until he was completely weaned off of the immunosuppressant. We pictured trips to a Quest lab or local doctor’s office for actual needle sticks, but NO! No need for the 8 different blood tests that have been done every Monday and Thursday for four months! Stopped! Just Like That!
We asked Dr. Porter whether he thought Jeff should see an orthopedist for his arm since he sometimes feels as if his arm is out of its socket and he still has limited mobility. For example, he can’t lift his elbow to shoulder-height. Dr. Porter agreed it might be worth checking out. Jeff presented Dr. Porter with his syringe spoon. He marveled that Jeff could have made it. Jeff left a spoon for Heather, too.
Jeff went downstairs to Radiology while I checked out at Dr. Porter’s. The receptionist understood our haste and offered to call me later with the date of Jeff’s next appointment. Although I followed close behind, I lost Jeff at the elevator and did not find him in the waiting room in Radiology. Good. That meant they took him back right away. I was glad I had slipped him a snack and some water during our long wait upstairs so he’d be alright even though it was well past lunchtime.
While I waited for Jeff, I remembered asking him in the car this morning whether he’d been nervous about the removal of the Hickman Catheter. He shook his head, then considered and said, “Not really.” A year ago a procedure such as this would have filled him with dread. Today… no big deal! What a brave guy! With Jeff’s answers to Dr. Lee’s Emotional Health questions fresh in my mind (high-scores for healthy), I thought of our Patient Jeff with pride. I smiled at the thought of his sense of humor and his great outlook on his forever-changed life. While I was thus focused on my brave man, Jeff was trying very hard not to pass out in the treatment room.
Jeff reported that the radiologist winced when he heard how long Jeff had had the catheter. There is a piece inside that is “something like Velcro” which is designed to allow tissue to grow in and around it so that the thing stays in place. Jeff is not fond of the Age of the Informed Patient. He told the radiologist, “I am a wuss. I’ll do better if you don’t tell me everything you’re doing.” The doctor tried to keep quiet but, in fact, he needed help from Jeff in determining whether he’d numbed the proper area of Jeff’s chest. He told Jeff the best way to get the Lidocaine in the right spot is to lift up the skin at the port site and… Jeff began sweating and had to tell the doctor he was feeling woozy.
The doctor alerted the nurse, Jeff said, with “some medical term for the-patient-is-going-to-pass-out.” She was busy re-stocking the crash cart which had been used for the previous patient and she didn’t respond to his call. The doctor called her again. She still didn’t come. Another nurse helped by lowering Jeff’s head. The nurse later apologized profusely, explaining that she really thought the doctor was kidding because he couldn’t possibly have two pain-in-the-butt patients in a row! Jeff’s pulse-oxygen and blood pressure were monitored for the duration of the procedure which, Jeff said, did involve some yanking, despite Nurse Susan’s insistence that no one would “yank it.” The nurse prepared an IV for him but the doctor didn’t want to start an IV unless Jeff’s pulse-oxygen was less than 60%. It was at 70% so the doctor said, “Good. He’ll come around.” The opening got only a BandAid but a large area is bruised.
The nurse had Jeff sit for awhile before he tried to get up. When he thought he was ready, he began to dress. He noticed his hospital gown had a lot of blood on it. He reached for his T-shirt and instinctively lifted his shirt over his “pipes,” until he realized the “pipes” were no longer there. He began to sweat and feel faint again. He rested and took his time and finally he was able to join me in the waiting room. He decided he wanted lunch at Pot Belly Sandwich Works across the street from HUP and was disappointed when I led him out the regular door instead of the revolving door. I promised him we’d use the fun revolving door when we came back. Which we did.
I stood near the button panel in the Perelman Center elevator and I asked the crowd of people, “Which floor?” One man said, “We’re going to the garage.” I asked, “Which floor?” He looked horrified and asked, “There’s more than one floor?” We talked him down from panic. It was easy to figure out which floor he’d parked on and we directed him out of the elevator at P1. When we reached P2, there was just one other person still with us, a man younger than us who said he’d been coming here for four years with his wife. He shook his head and said, “Who’d have thought I’d get to know this whole place so well.” We knew what he meant and added how easy it is to spot the newbies who have deer-in-headlight looks on their faces. We remembered how surreal our first visit to the Perelman Center was.
On the way home, we made a short stop to visit my parents and then we thought we’d drive by the nail salon in town to see if they were busy. I’d suggested Jeff paint his nails to try to fill in his chemo splits but I never thought he’d go for a professional manicure. The picks and splits must have gotten pretty bad, though. How incredible to find my husband sitting next to me at the nail salon! We explained his problem and asked if they had seen many cancer patients with bad nails. “Oh, yes!” they said. Three of the nail techs wanted to see Jeff’s nails. The first thing his technician did was put what Jeff called “superglue” on his nails to fill the cracks and then she filed it down. Whenever I looked over at him he had the strangest look on his face. Evidently, he was feeling queasy.
Jeff was finished before me and he waited patiently in the girl-dom for my French manicure to dry. Keith called to say he had missed his ride home and might need us to pick him up. He asked his dad, “Where are you?” Jeff did NOT want to say exactly where he was so he told him, “In Morrisville.” Keith called back a few minutes later to say a friend would bring him home. Jeff asked, “Which friend?” Keith answered, “Dave, one of the suite guys.” However, Jeff heard, “one of the sweet guys” and was now even more reluctant for Keith to know where he was! I know Jeff is going to be happy to have nails that aren’t catching on everything so I laughed when I realized that he considered this trip to the salon so hush-hush. Ha! I told him it was blog-worthy so he should be prepared for everyone to know all about his pretty manicure.
“Suite” Dave stayed for dinner. It was the first time we had met him and he made a good impression with his good manners and wearing his ROTC army fatigues. Nice guy; not “sweet.” Apparently he was standing right next to Keith in the dorm suite when Keith described him as “one of the suite guys.” Dave objected in an exaggerated low voice saying, “Whoa!”
Kerry and Kim both called to check on their dad and to get the gory details - and to work out details for Saturday’s family festivities. Snow is in the forecast for Melissa’s and Josh’s wedding day! Tomorrow will be another adventure!
