Recipient, Meet Donor

Dr. Moshe Chatsky was the oncologist on duty this weekend and Kim and I were lucky enough to be present when he visited Jeff.  This wonderfully warm young man was pleased to tell us that he has been called by the NMDP to donate stem cells/bone marrow.  He put himself on the registry before he was in college and now he is an oncologist and he is delighted to be needed.  His blood is being screened further and he is waiting for the call.  He marveled that his stem cells could be needed anywhere in the world.  He wondered whether he was needed in Israel or a surrounding country.  We similarly wonder where in the world Jeff’s stem cells will be coming from!  We compared notes about what we have been told about the process, giving us a happy connection of sorts – donor/recipient.  God bless him!

Dr. Chatsky told us something interesting.  He said his stem cells were desirable because he was male and, therefore, never pregnant.  Hmmm… Why would that be?  Could it have to do with CMV?  Dr. Kennedy had told us that when Jeff’s blood was screened, they learned that he had never been exposed to CMV (thanks to Judy, we now know that is cytomegalovirus, a type of herpes).  So the blood that is ordered for Jeff must be CMV negative because it would be dangerous to expose Jeff to CMV now.  This morning I was cleaning off my kitchen counter and found a note I had written after I last donated blood.  It said “CMV cytomegalovirus, multi-pregnancies.”  I was told by the NJ Blood Council that my blood could only be used for study since I had been pregnant five times and was at a higher risk for CMV.  I was told that I could visit one of the NJBC locations to have my blood tested for CMV and then, if clear, they could use my blood for donation.  I haven’t done this yet.

We have been hearing stories about people whose tastes – particularly tastes in food - changed after receiving stem cell/bone marrow transplant.  Jeff confessed that he was concerned he might lose his interest in woodworking.  I don’t know if that would happen but we began to brainstorm skills that would be nice to acquire - wondering, once again, about Jeff’s donor.  I told him it might be nice, for the wedding, to get the marrow of a good dancer.

Bloody Good Day!

Friday was a tough day.  Jeff was again indifferent to food and disinterested in reading or even having a back rub.  His blood counts had dipped.  Dr. Kennedy ordered red blood for him and - ouila! - Saturday was a good day!

Unfortunately, Jeff’s PICC line had to be removed.  In a few days, he can have another one placed in his left arm.  In the meantime, his right arm has a special purple hospital bracelet to alert nurses not to take his blood pressure or draw blood from that arm.  When the nurse gave him his purple bracelet he said, “Oh, good!  Now I can get on all the rides!”

Jeff is one of the youngest patients on the oncology floor and the nurses, I think, are a little fond of him.  Among his winning attributes are his charm, his sense of humor, and his functioning organs.  One of the nurses has dubbed him “The best pee-er on the floor” for his ability to produce large amounts of urine (yes, it has to be measured).  Another nurse wanted to “play his numbers” because he produced the exact amount of urine three times in a row!  Well, I’m glad he has nurses who take pleasure in their work.  Upon learning of her father’s distinction in this area (“Kim, I’m the best pee-er on the floor!”), Kim quipped, “You pee on the floor?!”

Ken and Kathy visited on this bloody good day and found Jeff to be his usual funny self and looking good.  Jeff asked about our next Dinner Club night.  It was decided that Jeff should gradually “acquire” eight hospital gowns for the group so that we could have a hospital-food-themed dinner and we would all have the appropriate costume.  MMM!  Can’t wait!  (How can hospital food be prepared at home?)

Lunchtime Entertainment

On Thursday, Jeff was feeling well enough to sit on the edge of his bed to eat his lunch.  I was sitting behind him on the bed; I had just given him a back rub.  We both glanced up and saw his neighbor across the hall swoosh past her bed, hospital gown flying, giving us a show!  Jeff’s appetite was momentarily affected but he was able to shake it off and finish his meal.  What a guy!

Aren't We Smart?

Today was a good day.  When I got to the hospital, Jeff was sitting in a chair at the end of the hallway.  He was alert and lookin’ good.  He told me that he thought he’d sit and watch the activity at the construction site outside the window.  How disappointing that the 3- or 4-acre site, the future parking garage for the hospital, had only two guys working on it.  One guy was carrying plans and another guy was digging a hole by hand.  So much for live entertainment!

We went for a stroll and soon detected the smell of fresh paint.  We found John, the maintenance man who had changed the bulb in the light fixture in Jeff’s room, painting the hallway.  John was glad to see Jeff up and about and the two of them talked shop a little while.  Jeff asked if he could help and, for a moment, I thought John was going to hand over the roller! 

Jeff’s appetite was good and he was alert all day even though he’d had a terrible night’s sleep.  (The lady across the hall had wheeled herself into his room in her wheelchair in the middle of the night – one of a few nocturnal adventures.)  Jeff walked the halls another couple of times throughout the day.  He paged through a book and a magazine.  We were able to read/play a little I Spy. 

The only proper way to read/play an I Spy  book is to snuggle in close with your sweetie.  Jeff made room for me in the bed and invited me in.  Before long we realized we should both have our reading glasses.  I got both pairs and climbed back in.  We read a few pages and I commented how smart we must look, with our reading glasses, reading I Spy.  If someone came in and found us thus, they would think we were very smart.  We read a few more pages and then we came to a really hard page.  We were having trouble so we did what we always do when we need a new perspective; we turned the book upside down.  We were studying the book very, very closely.  It occurred to us that now we must look really, really smart, with our reading glasses, reading I Spy, and with the book upside down!

A second ultrasound today revealed another blood clot at the heart-end of the PICC line.  He was given a couple of shots of anti-coagulant and he’ll have another ultrasound tomorrow to make sure it worked.  If not, one of a number of alternative plans will have to be put into place. 

Massive Muscle

Although Jeff tried to persuade us that it was just his “massive muscle,” I thought his hospital bracelet looked a little tight on Sunday and Dr. Kennedy thought his arm looked like it might be a little swollen on Monday morning.   She ordered an ultrasound to check his PICC line.  Sure enough, there is a non-occluded blood clot around it.  Treatment is elevation, heat and a low dose of anti-coagulant. 

The oncology physical therapist encourages Jeff to get up and walk.  Activity is important since he is going to be hospitalized for so long.  He hasn’t felt up to a walk every day; sometimes his anti-nausea meds make him too wobbly, too sleepy.  On Sunday he asked me to tidy his hospital gown to prepare for our walk “around the block.”  He paused at the doorway and asked, “Does my hair look alright?”  Ha!  You mean that new crew cut?

Yesterday, nurse Courtney agreed to disconnect the IVs so Jeff could shower.  Woohoo!  While toweling off, he noticed his skin tone is a little orange from the chemo.  After he was dressed and before he was re-connected, he made a break for it – to the door to look up and down the hallway.  He felt liberated without the IV pole.

Jeff looks forward to visitors.  They distract him from feeling cruddy and he likes to hear what everybody is up to – on the “outside.”

24-Year Streak Ends!

Yesterday, less than 24-hours after Jeff began his new chemo regimen, his brilliant, 24-year-long no-vomiting streak ended.  There are several drugs to control the nausea and he can take a few of them at a time.  The one that seems to work the best (Ativan) also makes him sleepy.  This bothers him but once the nausea gets bad enough - and he is persuaded that he has nothing better to do than sleep anyway - he asks for it. 

Tonight he will have the last of the three doses of Daunarubicin.  Maybe we’ll make him a paper chain for the remaining days of Ara-C and 28 days hospital stay.  He needs to see some sort of count-down since he really wants this over with.  He is a really good patient and jokes with the staff, his visitors and me.

We have been told since November to expect transfusions as part of Jeff’s treatment but he hadn’t needed any until today.  His red blood cells were 8.1 and they typically give two bags of blood at 8.0.  The doctor ordered just one bag for him.  This should make him feel a little better.

Addie’s family gave Jeff a couple of I Spy books which we broke out this afternoon.  He only lasted three pages before falling asleep.  I set the book aside, went downstairs to have lunch, took a short walk, returned to the room, sat down and began reading.  After awhile Jeff woke up with a start, looked at me accusingly and said, “Did you finish the I Spy?”  I guess he had a good nap.

Kim and I went to the Annenberg Center at Penn last night.  She was my back-up date in case Jeff wasn’t able to go with me.  We had a great dinner at a Mexican restaurant and we thoroughly enjoyed the dance troupe, Pilobolus.  She invited me to stay at her place for the night since I was pretty tired.  Once I knew Keith could tend the dog, I accepted her offer.  I fell asleep as soon as my head hit the pillow.  Mr. Maia was intrigued by the “tent” the blankets on the cot made.  In the morning, we had breakfast at the Turkish Café near her place – delish!  It was nice to have a night out on the town and to spend some time with Kim.

First Hospital Stay

3-3-11

Jeff’s first-day-in-a-hospital-ever went well.  He had a PICC line inserted (it’s stitched in), a chest x-ray, an EKG, visits from Dr. Kennedy and an endless line of other doctors and nurses.  He was started on IV fluids well before the first chemo bag was hung.  His nurse stayed with him for the entire first course of Daunarubicin (it's red and then, so was Jeff's urine) which took about an hour or so.  When I left tonight, he'd been receiving the 24-hour/7-day Ara-C for several hours and was only just beginning to feel uncomfortable. 

All day long, medical staff kept remarking how "upbeat" we are and how glad they were that Jeff was ambulatory and could walk into the x-ray and ultrasound rooms, go for a walk.  I felt really good about how "healthy" he is - mentally and physically.  I always said there is no one I'd rather be stuck on a deserted island with.  He is a great problem-solver with a fantastic attitude.

While sitting at bedside, I saw our church organist, Joe, walk past Jeff's door.  Joe works in the hospital’s maintenance department and we had just thanked God in church on Sunday that Joe could be called on to help provide a room free of maintenance issues.  I couldn't catch up with him just then but later I ran into him near the elevators.  He said he'd pop in to see Jeff.  I went to eat lunch in the cafeteria and when I returned to Jeff's room, Joe was there with his maintenance cart!  He replaced the shower head, put an aerator on the sink faucet, noted a light that needed replacing and ordered the repair.  Basically, he checked out the room and made sure Jeff would not lay there wishing he had his tool belt!

Hair Gone, by Kerry

3-2-11

To avoid bed-head and to minimize chemo hair loss, Kerry gave Jeff a very short haircut.  Jeff packed for the hospital without a comb because he really won’t be needing one.

On Sunday, at our family pizza party for our navy hero, Christopher, Jeff shared that he was afraid there would be something wrong with his hospital room - a ceiling tile askew or stained, nicked up paint, broken or missing moulding – something that he would have to stare at all month and which would prevent him from having a restful stay.  He said he would let me know what tools to bring each day!