Day Zero Plus Thirty-four – Smelly Pig, No Nurse, Invisible Man

Last night, around 7 p.m., Jeff realized that we hadn’t heard from the at-home nurse with an ETA for her morning visit.  Since he was worried about it, I called the on-call nurse who said Galina was scheduled and we should hear from her soon to confirm.  I wish I had remembered that Galina told us on Monday that she was off this Thursday.  We never got a confirmation call.  We expected a nurse to come around 8:30 a.m. since we have to hold Jeff’s 9 a.m. dose of Tacrolimus until blood is drawn to check his levels.  At 10:15 I called Becky, the coordinator/scheduler, and left a message asking whether we should continue to hold Jeff’s Tac.  At 11:30 I called again and finally reached Becky.  She said that they had scheduled Galina although she was off and they were trying to get everyone taken care of.  Becky said her first clue that something was wrong was when a normally calm patient called and was irate because no nurse had come.  She couldn’t say when someone would be coming but said we would hear from a nurse once one had been scheduled.  She instructed me to give Jeff his Tacrolimus.

Meanwhile, we worked out details for our trip to the city tomorrow.  The radiology department told us they didn’t want to schedule Jeff’s MRI until we determined which of two appointments with Jackie, the transplant coordinator, was the right one.  The system showed an 11 a.m. appointment as well as the 1 p.m. appointment we’d been given.  I called Dr. Porter’s office to verify that 1 p.m. was the correct one.  No!  The office will close early tomorrow for the holiday weekend so they moved up all the appointments.  Only they didn’t tell us!  Eleven a.m. it is.  Then back to radiology.  The earliest appointment they could give Jeff was 3:30.  Also on the Penn system is a 3 p.m. “Chemotherapy” appointment in “Chemo Chair #1.”  Jeff just about threw-up when he heard that.  He became nervous about it even though I assured him it was a mistake; obviously it was for something other than chemo.  I tried to find out exactly what but I never really did resolve that.  I wondered whether the MRI requires a dye or something; evidently not.  I asked what else it could possibly be for.  The receptionist in radiology thought it could be for labs since Jeff has a Hickman catheter; however, Jeff shouldn’t need labs since the nurse just drew blood today.  Hmmm…  Well, we’ll have a few hours between appointments to run around the Perelman Center to try to sort it out.  There are sofas in the atrium that Jeff can rest on between appointments.  It will be a long day.

I made the unfortunate decision to make pulled pork sandwiches for lunch today.  Jeff’s brother, Paul, was invited for lunch.  I started the pork loin in the crock pot late last night and Jeff woke up at 2 a.m. smelling it.  He thought he should get up and put the hood fan on but he didn’t.  Instead, he told me at 6:30 a.m.  Although my sensitive nose could barely detect the cooking smell, Jeff felt nauseous and the headache persisted.  By lunchtime, he recovered enough to enjoy not one but two pork sandwiches.  Kerry and Keith joined us for lunch, too, before heading out to Harrisburg, then Lewisburg, to pack a U-Haul with Theresa’s things for the move to Bensalem. 

I’d planned on visiting Pop this morning but my plans for the day were foiled by the late nurse visit - she finally came at 4:30 p.m.  I visited Pop after dinner with a masked- and-gloved-Jeff.  Jeff had wanted to see Pop for days so I called first to make sure Pop was up to sitting outside where Jeff could sit with him awhile.  I didn’t think it was a good idea to take Jeff inside.  Anyway, Pop looks good; he seems comfortable sitting in his wheelchair.  He insists the nursing care is not very good although today he acknowledged that he has had some good nurses.  My sisters are having a hard time seeing Pop there, knowing he isn’t happy about it.  I guess I am preoccupied with Jeff and am simply glad Pop is where professionals can take care of him.  That is the best explanation I can think of since I am usually the sap of the family.  Jeff is sad for Pop because he knows how hard it was to be in the hospital for a month when he knew his time there was limited to 4-6 weeks.  Pop doesn't know how long he will be at Manor Care. 

Some days Jeff is up to walking a block or two, sometimes twice in a day.  One day this week he didn’t want to walk at all.  Today he felt well enough for a short walk so we went up and down our block while waiting for a nurse.  With his long-sleeved shirt, gloves, mask, sunglasses and floppy hat, he really looked like the invisible man. 

Everyone thinks Jeff has good color and, as Nurse Dawn said today, he looks better than he feels. 

I wonder how Jeff’s donor is doing.  By now, I hope she has recovered fully.  It would be so nice to hear from her.

Day Zero Plus Thirty-one – Winged Scapula or Wing and More Prayer

I gave myself a couple of days off from blog-writing.  Thank you to all my avid readers who missed the daily updates.  

Jeff got a few short walks in this weekend even though he did not feel too great on Sunday.  We often see neighbors when we walk so it is both exercise and social therapy.

Kerry and Theresa signed a lease on an apartment in Bensalem.  They hope to begin house-hunting before too long.  They are under so much pressure now to move next weekend plus take care of all the last-minute wedding details.  I feel sorry for them.  In two weeks’ time, though, they’ll be married!  Kerry asked me to look at music choices for the mother-son dance.  Jeff noticed me crying and, when Kerry turned the other way, I signaled to Jeff to shut-up about my tears!  Kerry harasses me enough about my emotions without providing fuel.  Kerry left us to the task while he worked on table labels for the reception.  I had to bring the tissue box to the table for both Jeff and I to make good use of.  We were wrecks!  What will the wedding day be like for us?!

Last night, I sensed Jeff needed a change of scenery and offered to take him for a ride.  I tried to think of something he might like to “see” by driving by.  I didn’t come up with anything better than a drive to church with our paper recycling.  On the way home, Jeff said, “Kim and Bernie live near here.”  He wanted to drive by their house and, what do you know, the whole family was out front.  We tooted, waved, then parked and got out of the car to say “hello.”   We were invited inside.  I weighed Jeff’s need to see friends with the risk to his health and decided with his mask and gloves on, the risk was minimal.  Kim’s parents were in the house, too.  Her dad, Bob, is Jeff’s cancer compatriot and it was super to see him and his wife, Lee.  We stayed for a short visit – better than medicine.

This morning, at-home Nurse Galina recommended Jeff wear a long-sleeve shirt or carry an umbrella on our walks since Jeff doesn’t care for sunscreen or lotion with SPF protection.  He said, “Oh, great.  I already look funny with mask and gloves.  All I need is an umbrella, too!”  Jeff’s blood pressure was high so the nurse recommended we check it before Thursday when the at-home nurses would visit next.  We borrowed Mother’s blood pressure cuff and will check at least daily for awhile. 

Dr. Porter’s office called to tell us Dr. Porter spoke with a neurologist, Dr. Amy Pruitt, about Jeff’s arm pain and that she could see him this afternoon.  We headed down to Penn to see her for a 5 p.m. appointment, a good time to be heading toward the city - easy traffic.  Dr. Pruitt gave Jeff an extensive neurological exam and determined that his problem is in Cervical Root 8 but cannot explain why.  She asked whether there was one event which caused the problem but Jeff wasn’t sure since it happened during conditioning prior to the transplant.  That week was rough but he associates the pain with radiation since it started around that time.  Dr. Pruitt said that sometimes Shingles expresses with pain related to Cervical Root 8 but that seemed unlikely since Jeff is taking anti-viral meds prophylactically.  When she examined Jeff’s shoulder blades, she looked at me with alarm because his right shoulder blade protruded markedly over his spine.  I said a little shoulder blade protrusion is normal for him but it did look remarkable to me, too.  She called it “winged scapula.”  She noted the diagnosis of Cervical Root 8 is rare enough to not have a diagnosis code on the Penn system; the paperwork reads “chronic cervical radiculopathy.”  She prescribed Neurontin for the pain and ordered an MRI for Friday when we will be in the city anyway for an appointment with Jackie, the transplant coordinator. 

I referred to my earlier blog entries to see when I first began reporting the shoulder, arm and hand pain.  I became convinced that his complaints began shortly after the radiation treatment which was done on what he called the “kiddie table.”  There had been a problem with one of the radiation machines and he had to scrunch up on a tiny table and lay on his side for half an hour.  He was really mad about it because it hurt.  So now the question is, “Can he be fixed?” 

Day Zero Plus Twenty-eight – Ahead of the Curve

We had to get up early again today because Jeff had an appointment at Penn.  Nurse Heather asked Jeff how he was doing and Jeff responded, “fair.”  We discussed with Heather issues related to his care: medications (Jeff wishes he didn’t need so many), blood counts (steadily rising), appetite (nausea is occasionally a problem), activity level (can walk a block or two), pain management, skin rash, sleep, and limitations in the use of his right arm and hand.  Then Heather conferred with Dr. Porter. 

Dr. Porter examined Jeff, reviewed some of the issues Heather reported and told us that nothing about this experience is normal for Jeff as compared to Jeff-a-year-ago.  However, compared to other BMT patients, he is “ahead of the curve.”  He likes the way Jeff looks - as do most people who see Jeff.  He likes his progress in terms of his blood counts, appetite and activity level.  He thinks that he will eventually refer Jeff to a neurologist because he doesn’t know the reason for Jeff’s arm and hand problems.  He also said he isn’t sure they’re going to be able to do anything about it.

I flushed Jeff’s catheter ports without a medical professional coaching me!  As Jeff would say, “I impressed the heck out of myself!”  Of course, Jeff made sure I didn’t unclamp at the wrong time and kept everything sterile.  After all, he has a lot at stake here.

Mother came to visit Jeff after she saw Pop at the nursing home.  She was very glad to see Jeff - the first time since before the transplant.  She wished she could have made it down to HUP to see him but she was taking care of Pop.  Besides, it would have been an ordeal to get her there.  Mother became upset talking about why it is necessary for Pop to be in the nursing home.  Caring for him at home was getting to be an impossible task for one person, even with good family support.  We know this but apparently Pop is having a hard time with it.

Today Keith moved back home for the rest of the summer, Kim came to visit for the afternoon and Kerry and Theresa were here in the evening.  It was nice to have all the kids around.  Keith, his friend Michael, and I helped Kerry and Theresa assemble boxes for the wedding favors.  I loved being able to do something to prepare for the big day!

Day Zero Plus Twenty-seven – Eggs and Onions; What Next, Coconut?

We had to get up early today because the nurse was scheduled to come and draw blood before Jeff could take his Tacrolimus.  Apparently, Tac needs to be given on a pretty strict schedule.  Nurse Catarina and Nurse Charlene (in training) spent quite a bit of time here performing all the duties required:  drawing blood, coaching me through flushing one of Jeff’s lines, discussing nutrition and offering good tips for snacks and meals, asking about Jeff’s pain and offering suggestions for managing the pain.  The tubes of blood were placed in a bright green paper lunch bag in our refrigerator.  Within an hour or so it was picked up to be taken to Penn.  

Between rain showers we went for a walk around the block.  Jeff ate a little bit several times during the day, pretty much ignoring the traditional three-meals-a-day format.  His nausea seemed better.  He ate an egg for the first time since his transplant and it stayed with him.  A peanut butter and jelly sandwich seemed to be too much food at once.  He enjoyed dinner: a home-made steak sandwich with sautéed onions and canned green beans.  After dinner, Jeff was up for another walk, this time we went around two blocks! 

I vacuumed the whole house today.  Besides keeping it clean on doctor’s orders, I feel some pressure to maintain the wonderful cleaning job that our allo team did in preparing the house for Jeff’s return home.  Nancy checked to make sure I hit the couple of things the team never finished (I did) and Kerry nearly sneered at me when I put some books back on shelves, “Did you clean those first?”  I had.  Also between raindrops, I mowed the front lawn.

Paul came to visit and I took the opportunity to dash to the grocery store.  Paul brought some Tastykakes and Popsicle treats to tempt Jeff.  One variety was coconut, a flavor the former Jeff had not been too fond of.  However, just this morning Nurse Catarina advised trying foods Jeff didn’t like before because his tastes may have changed as a result of his treatment.  We’ll see… 

Day Zero Plus Twenty-six – Hangin’ Around at Home

Last night’s sleep was only slightly better than those spent in the hospital, Jeff thought.  He doesn’t like how the pain medication makes him feel so he is probably too conservative with its use.  Last night he took only one pill and got up many times through the night to try to get comfortable. 

This morning he took a sip of tea and his liquid antibiotic and vomited shortly thereafter.  Later he had some cereal and then worked very hard to get up the courage to swallow his many pills.  I tried giving him just one to start, with the others out of sight.  Then he sat at the table for a long time, swallowing one and waiting, then another, and waiting, etc.

I made some phone calls for appointments, arranged for the home infusion nurse, and let our church office know that Jeff his home.  I caught up on laundry – many loads!  Jeff’s medical supplies were delivered and Nurse Paul came to talk to us about what would be involved in Jeff’s home care.  He took Jeff’s medical history and taught me how to flush the lines on his Hickman Catheter.  If I don’t do things in the proper sequence, I’ll end up with blood when and where we don’t want it!  Jeff will keep me straight, I guess.  It seems like a lot of pressure today but I’ll be a pro by this time next week.  

This evening, Jeff managed to eat a small dinner and he walked around the block.  We saw several neighbors who gave him their best wishes.  Once Kerry was home from apartment hunting, I visited Pop at Manor Care.  He was in good spirits and we had a nice visit, sharing hospital stories again.  He can relate to Jeff’s pain and sleep difficulties.  When I returned home, Danny and Jennifer were visiting Jeff.  We were both glad to see them. 

Day Zero Plus Twenty-five – Quarter Way!

Today marks a quarter of the way through Jeff’s 100 days of Early Recovery.  We waited around all day to make sure it was safe for Jeff to return home.  Dr. Tsai wanted to wait until the afternoon to make sure Jeff’s food stayed with him.  It did!  However, as of Sunday there is a new flock of residents who are in the beginning of a learning curve.  Discharge was delayed a few hours.  More about that later. 

This morning Selena, the physical therapist, came to make sure Jeff could do stairs.  She took him to the stairwell and asked where the railing in our house was located, on the right or left going up.  Jeff grabbed the rail and charged up the stairs.  I think he was showing off.  Of course, she charged up right after him but when he got to the top and turned around he was shocked to see her right behind him.  Good marks for stairs. 

Then Tammy, the occupational therapist, came to see if she could help Jeff with his arm and hand.  His grip and pincer strength are both affected, particularly on the right side.  She gave him some cubes of exercise foam in various colors (density) and a foam tube which can be used over a utensil, pen or toothbrush to make it easier to grip and hold.  She suggested and demonstrated how to put on socks by using the thumb which is typically stronger than the fingers.  Jeff said he’ll have to get used to using his left hand to zip his fly. 

There was some confusion as to whether Jeff would be sent home with one or both of his ports.  Evidently, once Tacrolimus is administered through a port, it can skew any blood draws done from that port.  Capable nurses marked his port so it is easy to tell which one was used for the Tac.  Eventually it was decided to pull his PIC line and leave the Hickman catheter.  There was some confusion over one of his at-home medications; the resident couldn’t find the capsule form on the system.  We ended up with a liquid which must be refrigerated and measured out rather than the more convenient capsules.  There was a lengthy delay due to the new resident’s inability to reach Dr. Porter or Jackie, the transplant coordinator, to schedule Jeff’s follow-up appointment.  We eventually left without an appointment, with instructions to call tomorrow to schedule it or just show up in the office on Friday.

As I say, we waited and waited for discharge.  Jeff remarked, “I don’t know about this place.  You can’t check in and you can’t check out.”  (See also May 22 – Are We Off or On?)  They certainly could do better in those areas but I suppose the in-between is what really counts.  BMT is an ugly, scary process, and the nurses and staff at HUP are knowledgeable and skilled. 

We got home by 7 p.m. and I expected Jeff to go to bed with exhaustion.  Nope!  He sat in the living room with Giblet for a bit.  Then he sat in the kitchen and ate snacks.  This was surprising since he didn’t eat much after 3 or 4 p.m. at the hospital.  Then he put on mask and gloves to go outside and talk to a couple of our neighbors, check the raspberries (they’re ripe but he can’t pick them or eat them fresh), and then down to the basement to see the workbench Kerry finished while Jeff was away.  The neighbors tell us there is an “Under/Over” bet as to whether Jeff will make it to the wedding and another for how long it takes before Jeff has a tool in his hand.

Through the day we learned that Pop was moved to a nursing home near us.  Convenient for me and a little less so for Mother and my siblings, I think.  Maybe my family will loop from one of our patients to the other when they plan visits.

It is nice to have Jeff home.  Giblet couldn’t be happier.  I hope the two of them will put their weight back on and spend some quality time together.

Day Zero Plus Twenty-four – Bummer!

Jeff showered and dressed in street clothes for the trip home.  Nurse Tom nabbed a wheelchair so we would have it when it came time to go home.  He said he’d help us get Jeff and all his belongings to our car in the garage rather than using the front entrance.  This seemed like a good plan to me.

The pharmacist visited to go over Jeff’s medications and to talk about the possibility of needing IV magnesium at home.  Tacrolimus has a tendency to deplete the electrolytes so potassium and magnesium are frequently prescribed.  Both are given orally but sometimes IV magnesium is called for as well.  He gave Jeff a pill box to help us manage all the pills.

Until about 4 p.m. we were still planning on having Jeff at home tonight.  He needed a blood transfusion before we could leave.  That was expected to finish around 7 p.m.  He also had a touch of diarrhea or maybe it was residual effects of the Ducolax he’d been given yesterday.  To make sure, the doctors wanted to check him again for C Diff which is dangerous if not treated.  Unfortunately, this required waiting for Jeff to produce a stool and since he doesn’t feel like eating…  The labs take about 24 hours to get back so Jeff fears he won’t be able to go home tomorrow either.

Dr. Lee did his post-transplant assessment of Jeff’s physical condition.  This involved a lengthy survey.  Other doctors tacked on a few surveys to Dr. Lee’s so lots of data about mood, pain, body image, anxiety, and impact of the disease on the patient’s work, activity and family was collected at the same time.  I acted as recording secretary to spare Jeff the discomfort of writing.  His dyslexia gives him a lot of trouble when he is tired so I read much of it to him.  It was interesting to hear how he perceives various aspects of his disease, treatment and the physical toll it takes.  I reserved comment so as not to skew the results.

During the first assessment, completed the night Jeff was admitted, Jeff did 18 laps in 6 minutes on a 50-foot “course” that Dr. Lee set up in the hallway.  Today Jeff did 15 laps.  Not too shabby.  Dr. Lee had him stand from a sitting position and walk 6 feet or so down the hallway.  This was videotaped.  He asked Jeff to perform various balancing feats, all of which Jeff did pretty well, I think.  I could tell that it mattered to him to perform well.  Dr. Lee used a dynamometer to measure Jeff’s grip and he asked him several times, “You’re right-handed aren’t you?”  Jeff’s left hand is less affected by the pain than the right so that the left hand is stronger right now.  Jeff reminded Dr. Lee that his problems are mostly on the right side.

Jeff slept off and on this afternoon and was very, very quiet.  He looked so sad.  I went to the car and got a clean set of pajamas that I had hoped he wouldn’t need but had put in the car just in case.  I was on edge and finally excused myself to go home.  I was afraid I was contagious, that he’d get agitated if I stuck around.  At home I cooked the enchiladas he requested for dinner.  I froze them so that he can enjoy them later, hopefully tomorrow.

Day Zero Plus Twenty-three – Tomorrow! I Love You, Tomorrow!

Nurse Laura was on duty today.  She usually works nights so we thought she was unfamiliar with the morning routine when she asked Jeff if he wanted to unplug from the IV for his shower.  He reminded her that he can’t disconnect – too much risk of infection.  She said I can unplug you long enough to shower.  Jeff and I were both confused.  Jeff said, “Well, I haven’t been allowed to before.”  Laura said, “That’s because you were on IV Tacrolimus but now that you’ve switched to a pill, I can disconnect you.”   Whoa!  Liberation!  I told her she was our favorite nurse so far!  She laughed and added that she would leave it off for a couple of hours so Jeff could walk the halls without the pole.   

He did just that.  We held hands like we were on a date.  We strolled this way and then we strolled the other way.  We passed the same staff members over and over and over again.  Nurses congratulated him on his engraftment and recontamination.  He walked for about 15 minutes.  When we returned to the room he was tired.

Jeff’s ANC was 720 today, up from 530 yesterday.  Pretty good.  His other counts were a little bit higher than yesterday.  Because of the Tacrolimus, his potassium and magnesium will tend to be depleted so he may have to get IV magnesium at home.  Still, it looks good for discharge tomorrow!

Yesterday, I forgot to complete Jeff’s menu for today.  Jeff said he tried to do it; it mostly involves circling choices and a little bit of writing.  He had a lot of trouble doing it.  Nurse Laura brought the issue up with the doctors again because she thought it seemed like neuropathy.  There was a new team of residents today.  Several of them seemed fascinated by Jeff’s description of his numbness and pain.  Dr. Ahmedi still shrugged it off.  I hope he and Dr. Porter are right about it going away over time.  Later, I made sure Jeff could use point/touch to get Netflix shows on the iPad because he can’t play games.  He likes to watch YouTube videos on all sorts of subjects that interest him - another activity that requires very little typing and does not require holding the iPad. 

I called Pop to wish him a Happy Father’s Day.  We swapped hospital stories and compared nursing care.  Clearly Jeff is getting better care than Pop.  We have no complaints in that area!  Pop says he wouldn’t mind being in the hospital so much if he just had some good nurses.  Poor Pop…    

Nancy and Ken came in the afternoon.  Nancy filled me in on Pop’s condition (not great) and then I left Jeff with his visitors so I could go home early and bathe Giblet, finish allo-cleaning the entry and make our bed.  Happy preparations for Jeff’s return home!

Day Zero Plus Twenty-two – Class Five Rapids

I was relieved to find Jeff sitting in a chair eating his breakfast when I arrived this morning.  He said he didn’t feel great but he was willing to shower. 

Mark visited this morning and provided a welcome distraction for both Jeff and me.  Besides, he came with an update on Pop.  Probably on Monday, Pop will be moved to a nursing home.  Jeff was tired but was able to participate some in the conversation.  He did not seem thrilled when I suggested a walk around the hallway, but once we got him gowned, gloved and masked, he surprised us by walking the halls for about 15 minutes.  That is exercise time we can report for Dr. Lee’s study!  When his lunch was delivered, Jeff reluctantly ate half of a grilled cheese sandwich and faded into sleep shortly thereafter.  Mark joined me for lunch in the cafeteria.  It was nice to have the company.

Jeff’s ANC was 530 today.  Down a tad.  His WBC was the same as yesterday, 1.4, and his hemoglobin was 8.1.  Nurse Ashley said he will probably get a transfusion tomorrow.

His platelets seem to be on a steady incline, 37,000 today.

Jeff slept a lot, we did some puzzles, watched Netflix on his iPad and spent a quiet afternoon together.  We’re both unsure about discharge on Monday.  We are afraid to count on it. 

The boys are out in Western Pennsylvania enjoying Class 5 rapids on the Youghiogheny River - Kerry’s bachelor party.  Kim is in Baltimore at the bachelorette party (not sure what they are doing but it isn’t Class 5 rapids).  I am so happy they could get away and have fun.  I’m especially glad the boys have a chance to be together for what I hope is a bonding experience with each other and the rest of the guys.  Ditto Kim with the gals.  However, because I was so worried about Jeff, I had a niggling fear that some event would interrupt the fun weekend and with the wedding only three weeks away…  Oh, I know; don’t borrow trouble.  I am just saying these are the things that cross my mind.

When I got home tonight I wanted to do laundry.  I turned on the light in the laundry room and there was a wet spot, a splashy-looking puddle about a foot and a half in diameter.  Above it was a dripping PVC pipe.  This is my test, I thought.  What do I do when Jeff can’t fix this?  I put a bucket under the leaky pipe and went across the street to my plumber-neighbor’s house.  Both cars were there but Greg and Barbara were evidently out for Saturday night.  How nice for them.  I went home, debated who to call next, checked the bucket to see how fast it was filling up (not too much), and determined that it was the bathtub drain and that, yes, I could still do laundry.  I hope I am right about that.  I think the repair can wait.  I put a sign on the bathtub spigot, “Do Not Use – Leaks into Laundry Room.”  There.  See that?  I know just what to do.  I think the boys might know how to fix it and why pay a plumber weekend rates if it can wait?  Fingers crossed…  At least it wasn’t Class 5 rapids.  

Day Zero Plus Twenty-one – Cruel Irony

Jeff’s ANC was 540 today.  Since it had dropped from 770, there was a lot of debate among the residents, intern and attending oncologist about recontamination.  Recontamination is when a patient’s immune system is re-introduced to germs.  Gloves and gowns are no longer necessary for visitors to the patient’s room and the patient can leave the room if he dons mask, gloves and gown.  Dr. Ahmedi likes to say recontamination should take place in this order: “First the dog, then your wife.”  Jeff would like that.  He is sure no one is taking as good care of Giblet as he does; he’s probably right.  Technically, Jeff met the criteria for engraftment: ANC of over 500 for two days with platelets rising on their own.  However, the docs were not completely happy with the slow recovery of his blood counts.  Dr. Ahmedi said recontamination could probably take place tomorrow and, sorry, but Jeff won’t be coming home until maybe Monday.  The doctors all filed out of the room but instead of moving on to their next patient, they hovered near Jeff’s door.

 A couple of minutes later, Dr. Ahmedi stuck his head back in the room and said that one of the residents had campaigned to allow recontamination today; Dr. Ahmedi was persuaded.  We thought he was kidding and asked him to confirm.  He said he wouldn’t kid about a thing like that.  I planted two big smackeroos right on Jeff’s lips!  The doctors laughed and Harry, who was visiting at the time, asked if he should leave the room and draw the curtains.

Oh, cruel irony!  Jeff did not feel well enough to leave the room.  He ate very little, was uncomfortable in any position, felt too weak to shower and had tremors.  I asked Nurse Ashley whether his Tacrolimus level was too high again.  She said she’d let us know if it was high but now I realize I should have asked her to let us know either way.  I was so disappointed for Jeff; I had a pretty substantial melt-down when I left the room to get lunch.

Harry had spent the morning with us and then went to St. Mary’s to see Pop.  Texts from my sisters hinted something was going on with Pop.  He will be transferred to rehab or a nursing home, I think.  Not being able to help my parents, my sisters being torn between the two patients, and Jeff’s discomfort all put me at the edge. 

Around 6 p.m., Jeff said he thought he could bike!  He rode just 5 minutes.  Then I pushed – a little too hard, maybe – to see if he was up to just stepping outside the door.  I got him a mask, gown and gloves, we put them on him and, with a groan, he took his “dance partner” out into the hallway.  I reminded him what he told someone when they asked, “Where will you go when you are allowed out of the room?”  He replied, “I might go left or I might go right.”  He stood there for a few minutes deciding, I think, whether to go back into the room.  Then he took off (to the right) and did a slow, wobbly lap of the floor.  Back in the room, he staggered to a chair and let out a big sigh.  I was relieved he made the effort and left for home shortly thereafter, with a much brighter outlook.

A note about the blog:  I can view statistics about my readers which I find very comforting.   Mine is a “private” blog, so-called because only I, or my readers, can invite other people to read it and it is limited to 100 readers.  Yesterday 55 people viewed the blog.  I don’t know who you are specifically, but I am very, very comforted knowing you are out there thinking of us and praying for Jeff.  I thank you all.  We also enjoy your posted comments and private email messages.   

Day Zero Plus Twenty – “770”

This morning I was positively giddy over the possibility that today could be the day -  Jeff’s first post-transplant day with an ANC over 500.  Jeff said he “knows better” than to count on it so he tempered my enthusiasm with realism.  The morning dragged on.  

I stepped out of the room at one point and Nurse Alana introduced me to Jeff’s neighbor, Barry, who had a transplant one week after Jeff.  Barry also has girly marrow; his donor is a 25-year-old woman.  I spoke to him from the hallway for several minutes.  Finally, I asked if I could go into his room since I had already put on gloves and gown to go back into Jeff’s room.  Barry looked good and was sitting in a chair reading a book.  He describes himself as a loner so he is fairly content spending his days alone.  His wife is still recuperating from a double mastectomy so he doesn’t like her to drive from Hatfield too often.  They have two children 44- and 45-years old who have not made the trip very often either.  Alana told me she tries to get him to open his interior curtain but Barry says he feels like an animal in a zoo with the big window open to the busy hallway, no privacy.  I told him how much bigger the room feels when the curtain is opened and that it provides a change of scenery.  Besides, his good condition is good advertising; people should see it!  Alana told me later that Barry opened the curtains.  I will try to visit him again tomorrow.  His transplant had been delayed three times and required a change of donor.  The delays enabled him to spend time with, and then bury, his father. 

Jeff has had some changes in his skin which is not surprising.  Recent, very small break-outs are itchy and Dr. Ahmedi thought it was possible it was very mild GVHD.  Dr. Ahmedi reported Jeff’s monocytes were very high and said that usually precedes engraftment.  He was more reserved this time, guessing “Today, tomorrow…”  Dr. Porter visited later and was unimpressed with the spots/rash.  He also said Jeff would go home “early next week” as long as Jeff doesn’t have a fever in the meantime.

I went to lunch wondering when the ANC would come back.  While I was eating, Jeff texted, “770.”  I cried with relief!  I returned to the floor and saw Nurse Kristin and asked, “Can I kiss him?”  She said they didn’t have the go-ahead yet from the doctor and reminded me that usually they wait until engraftment is official, two days with an ANC over 500.  I told her Dr. Ahmedi was going to bend the rules and allow recontamination the afternoon of the first day since Jeff had been showing steady progress.  We never got the word so I just kissed his legs and arms on top of his clothes – a lot.  I think almost every one of the nurses assigned to Jeff since his arrival stuck her/his head in to congratulate Jeff.  For the staff here, engraftment is a regular occurrence, yet everyone seems genuinely pleased. 

Allo patients are not discharged on the weekends due to the many special discharge instructions that must be given.  We were told about that in our patient care class.  However, one of the residents (or a new intern?) came in to tell us that although he doesn’t make the decisions, he is pushing for discharge on Friday afternoon or Saturday, with a visit to the Transplant Coordinator scheduled for Monday in the office.  Later the pharmacist came to give us discharge instructions for the at-home meds.  He said he has seen patients discharged on Friday afternoon rather than waiting for Monday.  Once again, I began to imagine the best case scenario while Jeff stayed on an even keel. 

I left a voicemail for Dr. Lee, the man who is conducting a study on the effects of exercise in BMT patients.  Jeff did not want the study to impede his discharge one minute!  When Kerry spoke to his father tonight, he couldn’t talk long because Dr. Lee was there (at 9 p.m.!) to do Jeff’s assessment.  Only one more assessment will be done, after two or three months, I think. 

Keith came this afternoon for a visit and we realized it would make sense for him to take me home tonight so that I can begin to put the house back together following last weekend’s allo-cleaning extravaganza.  Then I’d be able to drive back tomorrow just in case Jeff is discharged.

Patience, patience...

       

Day Zero Plus Nineteen - And Waiting…

No, not yet.  Jeff’s ANC dropped even further, to 240.  The doctors are not concerned but young Intern Eric, who had “calculated” engraftment would happen today based on the trends in Jeff’s other blood counts, felt bad for Jeff and apologized.  Jeff was skeptical anyway – and he likes Intern Eric - and so he took today’s news pretty well.  Jeff’s WBC and platelets are improving so any day now…

Jeff’s sleep was marginally better last night.  His pain was about the same, he thought.  Even though engraftment hasn’t happened yet, Dr. Ahmedi switched his magnesium and Tacrolimus over to PO.  Fortunately, both are small pills.

The nutritionist visited today with more suggestions for at-home meals.  She also gave us some good ideas for the rehearsal dinner and wedding reception so that Jeff will feel like he is eating something similar to what the rest of us will be eating.  She has been really helpful in preparing us for the return home in terms of Jeff’s diet.  And, of course, It is exciting to think about Jeff-at-home.   

Food is still not appealing but Jeff managed his usual large breakfast, a slice of hospital pizza for lunch, his mid-afternoon Pop Tart, and an Ensure in the late afternoon.  When I left, he hadn’t mustered up the courage to try dinner and was asking for Compazine for nausea.

We were both very happy to see Greg today.  Having company was a nice diversion from the tedium of waiting.

Day Zero Plus Eighteen – Stand By Me

Not yet.  Jeff’s ANC dropped to 320.  We are assured that it is not uncommon for the counts to yo-yo a little before engraftment.  Jeff was so disappointed and I could do little to help him out of his funk all day.  He still had pain in his shoulders, arms and hands.  He had a little nausea, not bad enough to medicate.

It was a lonely, sort of boring day for Jeff and me.  Jeff’s hospital room is driving me crazy - and I’m allowed out of it.  I can’t imagine how anxious Jeff is to engraft and be allowed to “recontaminate” by walking the hallways (and kissing me). 

When I called my parents at lunchtime, there was no answer.  I knew it was likely that my father had been taken to the ER for a planned geriatric let’s-do-a-whole-lot-of-tests-in-a-couple-of-days visit.  Judy had everything in hand and I spoke with both she and my mother late in the day.  Pop was fine, just bored, waiting to be admitted.  The “B” word - bored.  There’s a lot of that goin’ around, it seems.

Ken came for a visit in the early evening.  As he and I were getting ready to leave, we saw some musicians in the hallway – two guitarists and a singer.  Music Therapy; perfect!  Palmer and Greg thought about bringing their instruments last week but Jeff probably wasn’t up to it then.  But tonight he certainly was!  Nurse Jenny said there are different volunteers who come every Tuesday although this was the first we’ve seen them.  They are somehow associated with WXPN.  We asked her to be sure to tell the musicians that Jeff would appreciate a visit.  They sang in the room next door, “Under the Boardwalk,” and then they sang “Stand By Me” for Jeff.

Jeff needs us to stand by him and pray for a good ANC tomorrow.

Day Zero Plus Seventeen – Stay Awake, Don’t Close Your Eyes

Shortly after I arrived in Jeff’s room this morning, we heard the distinctive sound of a chainsaw from seven floors below.  For more than three weeks now Jeff has been hoping that something would go wrong with the building mechanics that we can see below his window. He thought a burst pipe would be nice; some activity to observe.  At the purr of the chainsaw, Jeff jumped out of bed and rolled his “dance partner” (IV pole) to the wide counter at the window and leaned way over to find the origin of the sound.  At first, he could hear but not see.  After a few minutes, the landscaper moved to a planter bed further from the base of the building so that he could be seen from the 7^th floor.  How exciting!  It reminded me of two-year-old Kerry, hanging on the windowsill when he heard the trash truck.

Jeff’s blood counts were down a little bit from yesterday:  WBC .7 (same as yesterday), Hgb 9.5 (was 10), platelets 20,000 (was 23,000), ANC 350 (was 360).  Dr. Ahmedi says that a slow recovery to normal counts is not unexpected for a patient with “underlying MDS.”  He also noted that Jeff has 20% monocytes.  This was a count we have not needed to follow before.  Dr. Porter stopped by later and I asked whether the elevated monocyte count was an indicator for anything.  He thought it was “irrelevant at this time.”  I read and tried to understand what monocytes do.  It is complicated but it stands to reason that his would be whacky right now.  A layperson’s definition of monocyte can be found at this link:  http://www.medterms.com/script/main/art.asp?articlekey=4426

Dr. Porter also reminded us that he suspects Tacrolimus as the most likely cause of Jeff’s shoulder, arm and hand pain.  He qualifies this by saying “if it is drug-related.”  Jeff’s pain gave him so much trouble last night that he hardly slept at all.  Later in the day we learned the results of his Tacrolimus level.  It was high!  It would seem that Dr. Porter’s suspicion is spot on - again!  Jeff was given a lower dose.  He will continue to get IV Tacrolimus until engraftment.  Then he will begin to take it orally for a long time – but not forever, thank goodness.  PT came to drop off some arm exercises which will help him regain his strength and which may help with his pain. 

The PT experience at HUP has been very different than at Aria where the PT guru would run Jeff through his paces and, if Jeff was too weak to exercise, he would encourage Jeff to do what he could while lying in bed.  And he visited every day.  Here at HUP, not one exercise was required of Jeff.  There was only discussion about what his regimen might include.  Jeff did bike twice today and he did his leg exercises once.  The lack of sleep and pain knocked the stuffing out of him and he just didn’t feel great all day.

Jeff worked very, very hard to stay awake in the hopes that he will sleep well tonight.  When I left the room for lunch, Jeff snoozed.  I woke him with a phone call from the small courtyard below his room.  I waved up to him from a bench near the planter bed which had had the bushes removed by chainsaw this morning.

Kim visited before dinner and then she and I met Kerry for dinner.  It was going to be Kerry’s job to wake his father when he visited after dinner.  Poor Jeff couldn’t carry on a conversation he was so tired.  I hope the effort works for him tonight since two sleeping pills, oxycodone and Benadryl did not work for him last night.

Day Zero Plus Sixteen – I’m comin’ out!

Today was a quiet day.  No visitors.  Jeff drifted in and out of sleep for most of the morning.  He says he still isn’t sleeping very well at night but he sleeps very well during the day when I am there.  I teased, “My mere presence is enough to relax you.”  He said very seriously, “It is.”  He is not just being sweet; isolation is very isolating.  Although I try to touch him, my rubber gloves to his skin or to his clothes, we both look forward to engraftment when we can kiss and touch again.  

Jeff’s ANC count was back to 360 today which is what it was on Friday.  One nurse said she has seen some patients’ ANC counts jump as much as 1000 points in one day!  Dr. Ahmedi estimates engraftment by Wednesday and Nurse Christina estimates Jeff will be going home by Thursday or Friday.  It’s getting close now! 

Alana was making the bed today when Jeff began whistling in the shower for her benefit, “I’m Comin’ Out!” (Diana Ross).  Alana looked up at me with a shocked expression and then laughed heartily.

The nurses invited me to their “barbeque” today.  It was a covered dish luncheon.  One other family was invited, a young mother and her two-year-old daughter, who have been visiting her father every day for about as long as Jeff has been here.  The nurses all made us feel so welcomed and they are all so compassionate.  Jackie Smith, the transplant coordinator, was there with her two daughters.  The nursing staff often doesn’t get much of a break for lunch and it was nice to see them sitting down for a meal together.  There was an urgent announcement that emptied the room in a flash.  It was the young mother’s father who’d had an emergency of some kind.  Most of the nurses returned shortly thereafter. 

Jeff rode his bike twice today and he did his leg exercises twice.  They exhausted him but he did them.  He watched part of the Phillies game and laughed when Nurse Alana stuck her head in the door to ask who was winning.  He realized he didn’t even know who the Phillies were playing!  I read some of my blog entries to him, we watched some YouTube videos on his iPad, we did some short brain teasers, and we watched part of a movie.  And we talked about what it will be like to be home again.

Day Zero Plus Fifteen - Things That Go Psssss in the Night

Jeff reports success getting to sleep with two sleeping pills. Hurray! Now we know what works for him. Unfortunately, at 9:30 pm he heard a gush of air and thought one of his IV tubes blew a leak. It was his air mattress. Nurse Holland ordered a new one at 2 am when the thing really blew. Jeff says he must have eaten one too many string cheeses.

The attending oncologist, Dr. Ahmedi, thinks Jeff is doing well. Jeff's neutrophil (ANC) count was down a little, to 300, today. Nurse Christina said not to worry. It is normal for the number to jump around a bit as his body begins to use the new cells to make blood. We asked again for a visit from PT since they have yet to assess Jeff or run him through his exercises.   Jeff has begun the leg exercises described in his patient care manual in addition to his biking "regimen."  HUP doesn't have PT services on the weekend.

I asked Dr. Ahmedi whether Amy Lyn would be able to visit since she just had a booster shot - a live virus - for something she needed for nursing school in the fall. The answer: not for 30 days. Uncle Jeff will miss seeing her but she and her mother already helped us by allo-cleaning our bedroom for which we evidently owe her hush money.

Even though Jeff sits in the shower, he is getting strong enough to sing in there.  Yesterday he sang a tune from The Fantastiks, "September."  Today as he washed, Alana made up his bed.  He wanted to sing something special for her but couldn't think of the perfect song for the occasion.  He'll have to think about that.  A hymn?  Splish Splash? 

After only one dose of pain meds this morning for arm and shoulder pain, Jeff drifted in and out of sleep most of the day.  During the times he woke up, he ate pretty well (maybe not 1000 calories, though) and he could look at a book for a short period of time.  His arms hurt too much in the morning to hold the iPad but by the afternoon he could play short games off and on.  TV was awful.

Today a wonderful team of family and friends allo-cleaned our house so that we can take Jeff home to a relatively safe environment when he is ready. Jeff asked, "How are we ever going to repay those people?" It was a big job. Every surface had to be wiped down, ceiling to floor. They even hit the contents of our medicine cabinets, pictures, furniture, most of the appliances, etc.

While that was going on, Jeff and I had a visit from Pastor Oxley. We told him how pleased we were that he came because several of our people were cleaning our house and, therefore, were not able to visit.  Pastor O asked whether Giblet would have to be sanitized.  Jeff told him the next time you see Giblet (our 18-pound black hound/pointer mix), she would be bleached white!  We howled!  Pastor O related a story in which two groups of people were not getting along too well.  Jeff quoted lyrics from the musical, Oklahoma, "The farmers and the cowboys should be friends."  I am beginning to think his girly marrow is settling in very nicely.

Day Zero Plus Fourteen - No Sleep for the Weary

The Benadryl didn’t work very well as a sleep aid.  Jeff asked if they had a sterile mallet.  When the night nurses ask what might help he says, “a back rub.”  He is disgusted that the nurses won’t do that for him.  I guess administering drugs is in the job description but back rubs are not.  I wish I had it in me to stay until he falls asleep.  Or wouldn’t it be nice if we could store one of my daytime backrubs for him to use at night?  Pray for a solution to this problem.  It is what he describes as his biggest issue.

Jeff still isn’t crazy about showers.  Thank goodness for the shower chair.  It seems so funny that he can ride the bike for 10 minutes but finds the shower so unpleasant.  Well, we do have to cover his ports which he is squeamish about (I thought he’d gotten over it after all this time).  And it does require a good bit of wiggling around.  Maybe his IV tubing, a little shorter because of the Aquaguard wrap, gets tugged a little. 

The attending oncologist is happy with Jeff’s blood counts.  The platelet count is still not “real” because he was given platelets recently.  His white blood count had been .3 for about six days, then .5 yesterday and .6 today.  Jeff’s ANC on Wednesday was 120, 250 yesterday and 360 today.  Engraftment is defined as an ANC of 500 or more for more than a day and a platelet count which is rising on its own (without transfusion).  The doctor thinks he’s on target for engraftment on Monday or Tuesday.  He also said that when engraftment happens, Jeff will be allowed out of the room.  “When?,” Jeff asked, sitting up straighter and eyes popping out of his head.  We knew that I’d be allowed to kiss him when his new cells engraft but we didn’t know – or had forgotten – that he’d be allowed out of his cell.  He is getting anxious to go home.  Nurse Kristin says they usually keep patients another week after engraftment.  I think it depends on his blood counts.  We’ll see.  It’s hard not to get too excited. 

Since Jeff has been complaining about how often he has to pee due to all the bags of fluids he is getting, I celebrated the news that his anti-viral medication, Acyclovir, is going to be given orally after today.  We all laughed about that because Acyclovir is in the tiniest IV bag ever.  Nurse Kristin said he’ll have to swallow more water than is in the IV bag in order to get the pill down.

Dave, a friend from church, came for a nice visit this morning.  We talked and laughed -and made plans to have our car detailed at his shop next week so the car will be ready to transport our patient extraordinaire when the time comes.  Before Dave left, he read Psalm 104 which was read in church on Pentecost Sunday.  Nurse Alana came in to take Jeff’s vitals during the reading.  When Dave was finished reading, she asked him to read Psalm 91 for Jeff.  It is what she reads every morning before coming to work.  Dave granted her request.  You might call it the “Disease and Faith Psalm.”  Alana thanked Dave, finished her chores and left, as joyful as she always is.  I thought she was checking Jeff’s blood-oxygen level and blood pressure while Dave read but Jeff told me later that she had held his hand through the entire reading.  I am glad we hung Ken’s stained-glass cross in the window.   It enables staff members who are so inclined to talk about faith with Jeff.

Kim and I went out to lunch and to a small photography exhibit entitled, “Girl Culture,” across the street at Penn’s Fisher Fine Arts building.  It was nice to get away for a little while and take in a little culture.

Judy and Mark visited in the afternoon, too, and then went out to dinner with me.  It was a good day for Jeff to have visitors because he was antsy, uncomfortable in bed and in a chair and on the bike and…  

Day Zero Plus Thirteen and Wedding Minus 30

I walked to the hospital early today due to the extreme heat.  Nevertheless, I was soaked when I got there.  Jeff said that his best effort yesterday – no naps, holding out for meds until bedtime – did not yield a good night’s sleep last night.  He’d been given a sleeping pill around 9:30 p.m. and it didn’t work.  Then his shoulders and arms began to hurt so he asked for Oxycodone.  Then he was told that he couldn’t have any more sleep aid until 2 a.m. and he became worried that he would never sleep, so he got some Ativan.  The plan for tonight is to use Benadryl because he slept all day when he had an allergic reaction to his platelets and was given Benadryl.

Jeff ate more than 1000 calories today, including a cheesesteak sandwich for lunch.  He even enjoyed it a little bit although it was really hard for him to get it down.  It stayed with him, too.  He seems to eat a good breakfast, a small lunch and really doesn’t ever feel like eating dinner.  He thinks he needs to try harder at dinnertime because that may be contributing to his sleep problems.  The nurse assistant, Alana, weighs him every day.  With the amount of IV fluids he gets, it is hard to tell how much weight loss/gain is real but today he was up two pounds.  Kim refers to his efforts as his “wedding diet.”

Alana is very encouraging and teases him, taps on his window to wave at him, pops her head in to say “You’re doing great!”  She is from Trinidad-Tobago and has an island accent which is only sometimes difficult to understand.  She wants “a good man” like Jeff.  Her sister had a problem with her sink and had a plumber come to her house and “he never left.”  Jeff suggested she call a plumber, too.  She says, “Oh, no!  For me they want so much money…”  Several of the nurses have asked to see more of the magazines which have featured Jeff’s work.  Maybe Kim will bring some when she comes back from the allo-cleaning party at our house this weekend.

Jeff got up to go to the bathroom and took off without grabbing his IV pole.  He laughed and said, “I forgot my dance partner.”  He says that is his version of pole dancing.  I keep mentioning the Pole Dance Studio which is one block from Kim’s apartment.  I think that would be the greatest fun (I’m all about the apparatus which is why I like rhythmic gymnastics and Stomp).  I had Jeff do his leg exercises this afternoon and the instructions warn the patient to hold on to a counter or chair, not something that moves like an IV pole or hospital tray table.  I guess that happens.  I saw a guy in the elevator this week who kept standing on his IV pole and making jokes about his scooter, much to his wife’s dismay (some patients are allowed outside).  He had to be pushing 65 or 70 and was clearly having a good time.  I wondered whether it was his first trip off his floor since he was admitted. 

Dancing!  We are 30 days from Kerry’s and Theresa’s Wedding Day and we have got to get Jeff strong enough to dance at the wedding – or at least strong enough to attend.  I tell Jeff the wedding is a month away and he seems more willing to eat and to comply with the exercise program.   We are both looking for Tuesday to come quickly.  Engraftment should happen on or around that day. 

Jeff figured out how to add sound to the Tight Wire game on his iPad.  Every time he made the fat guy fall, you’d hear, “Ahhhhhhh!” followed by a splat.  Jeff would look up at me and giggle like a goofy little kid.  Thanks, Ken.  Next, he’ll be downloading the Burp and Fart Piano mentioned by another one of his friend/customers.  I won’t name her, to protect her innocence.

Today was a little lonely.  No visitors.  Kerry visited tonight but I’d already left the hospital by the time he arrived.  Text messages from my siblings and an, as always, well-timed phone call from my friend, Jennifer, kept me from feeling too sorry for myself. 

Day Zero Plus Twelve – Endings and New Beginnings

Today was a great day!  Jeff could watch – and focus on – TV, he played games on his iPad, made a nice effort to eat 1000 calories (almost, not quite), rode 10 minutes on the bike, sat in a chair for awhile and never napped all day!  He did not seem so discouraged and smiled plenty!  He was given two units of red blood cells so tomorrow may be a good day, too.

Until today, he objected to the smell of cooking – or cooked food - in the room.  Today, he wondered whether he could have his Pop Tarts warmed in the microwave!  Oooo!  Then he said, “How can you go wrong with the smell of cinnamon?”  He actually seemed to enjoy the smell.  The nutritionist came in again threatening (well, she’s very nice about it) to start IV nutrition.  She is concerned about his weight loss - 23 pounds now.  I told her that his interest in food was returning and that he’d ordered a cheesesteak for tomorrow.  He was craving pizza and “real” burgers which are not among the offerings on the menu. 

Pastor Wiseman called.  I’m sure she was happy to hear Jeff’s voice instead of getting a report from me.  She would make Jeff’s excuses for the council meeting tonight (ha!) and let everyone know he’d had a good day.  He told her what he’d told me last week on a rough day:  that he prays, “God, get me through this transfusion (or fever, or whatever)…” and then he prays, “God, did I already ask you…?” 

Our friend, Ken, recommended an iPad game called “Tight Wire.”  You have to maneuver the iPad to get a fat guy across a tight wire from one city building to another.  He has a charming plumber’s crack which, Kim noted, is distracting.  On Level I, I was successful on my first try.  Jeff, in his weakened state, could not do it.  So, it actually may be a good exercise for him.

Jeff enjoyed watching Meredith Viera’s last Today show appearance.  He said he could really relate to her marking the end of one job and having new beginnings.  He said the show was a tear-jerker (remember, he said he hadn’t cried yet this hospital stay) and I asked if he cried.  He said, “Yes,” as though he was joking but his eyes told the truth.  He was touched by the things her TV friends did for her to mark the occasion. 

Tomorrow marks one-month-until-the-wedding!  We have to step up his recovery a bit to make sure he is strong enough to go.  The attending oncologist and the nurses all think it is possible!

The nurse told us that the man in the room next door to Jeff got his bone marrow from a 23-year-old girl.  So there is another man with cootie blood on the floor! 

Day Zero Plus Eleven – Prison Break-Out

When I got to the hospital today, Jeff looked a lot better than I expected and a lot better than he did last night.  He was alert and talking to his nurse.  When I suggested we get him into the shower while he was awake, he grumbled.  He did not feel up to a shower but he didn’t have one yesterday and they like him to wash his whole body with antiseptic wash every day so there was no getting around it, he needed to bathe.  It would have to wait, though, until after his CT scan.

A CT scan of his lungs was ordered because of the fever.  That cannot be done at bedside so, Road Trip!  Or at least Elevator and Dungeon Hallway Trip.  I was determined to keep Jeff awake to appreciate the change of scenery along the way which included two works of MRI art and a bas relief sculpture in an otherwise bland, long, narrow hallway.  He didn’t seem to have any trouble staying awake.  It felt like we were breaking him out of prison.

When we returned to the room, I noticed that the nurse had changed the bed.  He isn’t allowed to get into a clean bed dirty so I suggested bathing him with a basin of water while he sat in the chair.  He wasn’t happy about that option either and griped and complained a bit.  A chair had been placed in his shower stall so he decided a shower was the best choice.  He took the quickest shower in history and, while getting dressed, he had a little bloody nose and threw up.  Then he flopped back into bed.

Later we learned the x-ray and CT scan showed nothing remarkable.  We also learned that Jackie, the transplant coordinator, would not be happy to learn that Jeff is spending so much time in bed.  We were told he should be spending more of the daytime in a chair and biking than in bed and, if Jackie had anything to say about it, the bed would be removed!  Surely that is just a threat and they don’t actually do that?!  The social worker who stopped in today said she had heard that rumor, too, and figured it was an urban legend.  Jeff did manage to sit in the chair for about 10 minutes (hunched over and holding his head for most of the time) and then he biked for five minutes and returned to bed.

Jeff has lost 18 pounds.  The goal is for him to take in 1,000 calories per day.  Today he ate about 850. 

Late in the afternoon Jeff received two units of platelets.  Nurse Deb stayed in the room while it was being transfused in case he had another reaction.  No problems, thank goodness.  I was concerned that they would dope him up with excessive Benedryl because of his reaction last week but Deb assured me that they wouldn’t do that unless he had an allergic reaction to platelets more than once.  Maybe he’ll feel a lot better tomorrow with the help of these platelets.

Keith and Addie visited in the evening after I had left the hospital.  I know he appreciated the visit because time is dragging on so slowly for him.

For a few years now, Kim has volunteered for an event of the Leukemia and Lymphoma Society.  Her friend and co-worker, Helen, is a survivor and is very involved with The Dude Hates Cancer bowling fundraiser.  Kim just told me that she has put together a team of her cousins for this year’s event in August.  That is awesome!  However, by doing so, she has lost some of her own sponsors because they are now participants, too.  Stay tuned for more news about that.

Day Zero Plus Ten – First Fever

Jeff’s pain has traveled to his legs and he had a difficult night again last night.  Although the doctors are not sure what is causing his pain, they feel it is a result of the pre-transplant conditioning and only time will heal it.  Heating pads may help in the meantime.  Dr. Perl had explained that if they run tests to find the reason for the pain, the results might not be very accurate and treatment may not be appropriate at this time anyway.  He gave a wonderful explanation about this yesterday and I hope I have paraphrased it more or less accurately.

Today I have had several occasions to think of my sister, Judy, at age 6 or so.  Jeff tries very hard to eat but the pain meds are a challenge – he fell asleep mid-chew with his morning cereal, his mid-morning yogurt and his afternoon string cheese.  Judy used to fall asleep at the dinner table, sometimes landing face-first into her meal.  So cute, both Judy and Jeff!

Palmer and Greg visited this morning and Jeff grunted and “hmm’d” at appropriate points so that he fooled us into thinking he was actually following the conversation.  He may have caught some bits of news between Zzzzz’s.  Palmer and Greg joined me for lunch and I really appreciated the company.

Dr. Porter stopped by and encouraged Jeff to ride the bike even on these druggy days when he doesn’t feel like it.  “This is when you really need to push yourself,” he said.  After Dr. Porter left, Jeff was able to drink half of a Chocolate Ensure with half a pint of milk.  He says it was pretty disgusting.  Then he rode the bike and while he was upright, I rubbed his back.  Again he said it really seemed to help.  After 10 minutes of slow riding, he got back in bed and fell instantly to sleep again.

This afternoon Jeff developed a fever.  A chest x-ray was done at bedside and blood cultures were done.  There were two blood draws done: one by Nurse Tom from the Hickman catheter and another drawn peripherally by a phlebotomist.  Tom said that if the results don’t match, they’ll know that the infection is in his line. 

Nancy and Ken visited and joined Kerry and me for dinner.  We had a good visit and wondered together how Jeff’s donor is doing.  I hope she is doing alright. 

Having so much company today made a tough day bearable - for me, anyway.  The company may have helped Jeff pass the time but it was sometimes hard to tell how aware he was of their presence. 

Day Zero Plus Nine - Angry Birds

Jeff had some trouble sleeping again last night even though he was given pain meds every four hours.  It was a fitful sleep.  When he slept a solid two hours straight, the night nurse commented about it.  Jeff couldn’t believe it had been only two hours; to him it felt like eight.  Time is going very slowly for him.

I got to the hospital early so I could get him showered and dressed before I went to Theresa’s bridal shower in Harrisburg.  When I arrived, Jeff was eating breakfast but he was really uncomfortable and discouraged.  I rubbed his back.  Sometimes when I rub his back he doesn’t say much about whether it helps.  I think it does because I can feel him relax.  Today he said it felt “really good” and that almost made up for yesterday’s grumpiness.  He still felt weak and was not at all sure he was up to showering.  I told him we’d be quick and have a chair ready for him outside the shower when he was done.  We did just that and then immediately plunked him back into bed, mostly dressed.    

Judy and Mark spent the day with Jeff while Kim and I were at the shower.  They reported Jeff having alternating periods of sleep and wakefulness during which they played Angry Birds on the IPad.  They said Jeff was pretty good at it but lost concentration at one point and just stared at it.  Judy and Mark left some things on the IPad for me to find tomorrow.  Hmmm… I can’t wait to see.

The bridal shower was fun and it felt a little like I was playing hooky from school.  It was very nice to get away from the hospital for a time.  Judy kept me posted periodically until she texted, “Are you having fun?” and I replied, “Yes.  Now stop bugging me.”  Judy and Mark saved the day because I very much wanted to attend and would not have been comfortable leaving Jeff on his own for so long. 

 

Day Zero Plus Eight - Kisses, Tears and String Cheese

Jeff had a bad night. He had pain in his arms and shoulders and did not ask for pain meds until 5 a.m. Then the nurse gave him a bit of a hard time because he had waited so long and described his pain as 9. They made up for lost time and kept him drugged all day.

Good news: no vomiting. He ate breakfast, string cheese (the only food he actually had a hankering for and had been trying to procure from the snack cart for two days) and half of a vanilla Ensure milkshake which he thought was coffee-flavored. Note: do not offer Ensure and string cheese together. They evidently do not complement each other.

I asked if he wanted to try to watch tv but he said it wasn't necessary since he could create his own scripts behind closed eyes. Mostly he slept. He was pretty weak, too, and almost passed out when he was showering. I learned that the bathroom door opens both ways - handy. Nurse Nancy opened it out when I told her Jeff felt like he was going to pass out. He will probably get red blood cells tomorrow. That should help.

I know it was an unfortunate coincidence that the day Jeff had trouble in the shower was also the day I decided I'd had enough of this hands-off stuff, Just before he stepped into the shower, I gave him a kiss in the middle of his back and hugged him and rested me cheek against his bare back. I thought that was pretty harmless. He was headed into the shower anyway.

I encourage Jeff to eat but, of course, he never feels like it. He does the best he can. I gently - I think gently - offered a snack and he snapped at me. I often get a shrug and if I get his Elvis look that means he doesn't want to but thinks he can. He never scolded me before and he made me cry! I sat down on his bed and told him he made me cry. He said he hasn't cried yet. I guess the screen name I gave him for his new IPad is appropriate: "bist du stark" - all one word.

Day Zero Plus Seven - Half-way?

For all the trouble Jeff had getting his platelets yesterday, they sure helped!  He had a count of 5,000 yesterday and 81,000 today.  He biked 20 minutes, going as fast as 24 kilometers per hour at his fastest.  Harry visited all morning and Jeff stayed awake, alert and able to converse the entire time. 

Jeff was not put on TPN today.  He was able to have a good, normal breakfast, Pop Tarts and milk for lunch, raspberry ice and banana in the afternoon, and a few peanut butter crackers for dinner.   

I pointed out to Nurse Tom that we were told PT would visit on Tuesday or Wednesday but we hadn’t seen anyone all week.  Tom said, “Of all the people on the floor, Jeff needs PT the least.”  I guess that means he is doing well although I thought a visit from PT was more appropriate for someone as “fit” as Jeff since he is trying to exercise when he can. 

We had an interesting conversation with Nurse Tom.  He saw the Old House Journal magazine cover with Jeff’s Stockton kitchen on it and became very excited.  He said he used to be a hospital administrator and dealt with architects and designers a lot.  He said his third career might have been in historic renovations.  He mentioned a few Philadelphia area renovations that he admired, one on Drexel’s campus.

Dr. Perl and his student doctors all seem very pleased with Jeff’s progress.  All issues he is having (hiccups, elbow pain, sore mouth, nausea, loss of appetite, etc.) are all expected and manageable.  His tacrolimus levels will continue to be monitored so that, hopefully, nausea won’t be as big an issue as it had been.

Kim pointed out that today is potentially the half-way point, if a 4-week hospital stay is all that is required.  Jeff is not particularly aware of what day of the week it is but he is starting to ask regularly, “How much longer?”  and “Is engraftment next week?”  Engraftment will probably occur somewhere around June 14^th – so, no, not next week.  He has some anxiety about engraftment and I know he will be very, very relieved when his new cells are functioning well for him. 

Kim and Kerry visited in the evening.  On Jeff’s instruction, Kim and I purchased an IPad for him tonight.  We had been trying to persuade him that he needed one and he has finally agreed that it would be useful.  Kim is setting it up as I write and she is very excited – and a little jealous – that he has such a cool toy. 

I tend to focus on Jeff’s bone marrow donor as the helper-of-the-year (which she is!) but many blood donors have also helped.  I think I take blood products for granted because I donate whole blood and platelets and lots of other people do, too.  Without whole blood and platelets, Jeff wouldn’t have been able to have the bone marrow transplant. 

Day Zero Plus Six – Sneezy, Sleepy, Dopey and Doc

Jeff was told this was a “stay-in-bed day” because his platelets were at 5,000.  No biking is permitted if his platelets are lower than 10,000.  One of the staff hollered into his room, “Hi, Lance!”    When Jeff told me this, I thought, “Oh, no!  They’re going to give you someone else’s platelets!”  Then I realized Jeff earned this nickname for his stellar effort of biking maybe 1½ hours total in five days.

Dr. Porter stopped by to say he thought Jeff was doing well.  Everything Jeff is experiencing is expected.  He offered suggestions for food that might be more appealing and provide more calories and nutrition.  He said, “You are like a child who has had his tonsils out; we don’t care what you eat as long as you are eating something.”  Well, that’s the tricky part. 

Nurse Beth hung the first of two bags of platelets and, as soon as they began going in, Jeff’s eyes started to itch.  Then he started to sneeze and sneeze.  Beth was still in the room, working on the computer.  Jeff said, “I really think something is going on here.”  I noticed his eyes getting really red and puffy.  I said (I may have hollered a little), “You’re eyes are swelling up!  His eyes are swelling up!”  He’d already been given some Benadryl prophylactically because evidently it is not uncommon for patients to have a reaction to a blood donor’s platelets.  This hadn’t happened with any of his other platelet transfusions.  Beth gave him more Benadryl.  It was quite exciting!  The sacks under his eyes became suitcases, large and flaming red, then things subsided a little and then they’d enlarge again and so on.  Eventually, the excitement was over and he slept

Dr. Perl came in just moments after the additional Benadryl was given.  He said that he was “Doc” and Jeff was both “Sneezy” and “Sleepy” and maybe “Bashful” or maybe just “Dopey” because he couldn’t answer the questions posed to him too well.  Dr. Perl and the student doctors checked for hives; there were none. 

Although Jeff had eaten breakfast, he threw up his oral antibiotic at lunchtime and was really too sleepy to be interested in food the rest of the day.  Another small dose of the antibiotic was given to replace the dose he’d thrown up.  This antibiotic is preferred in its oral form for treatment of C Diff.  Still, they may have to give it through the IV.  He will probably be put on TPN (IV nutrition) tomorrow because he just isn’t eating enough.  He has lost six pounds.

I gave him a back rub today and asked whether his drugged sleep was providing an opportunity to sort out his psychedelic dream.  He said, “No.”  However, he was able to tell me more about the dream.  He said there was a green X on some of the stones in “the stone bag” and “he” (one of the stones with the green X) was like a taxi driver whose job it was to show Jeff around to see the other stones.  I think he said the stones represented aspects of his disease and recovery.  He also rubbed his feet on some sticks and the sticks turned into “fluff” which he thought represented people in his donor’s family.  Wow!  Heavy, man!

I hope the platelets will help him to feel better tomorrow.