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! 

Whistle Your Cares Away

Jeff asked me to help him change the ringtone on his new cell phone.  He chose “Whistle Your Cares Away,” a lively tune which has a few bars of actual whistling in it!  He is pleased with his choice.  It epitomizes his attitude toward his disease.   

Well, we knew Vidaza was a long-shot (only 6 out of 100 patients get the desired result).  Dr. Kennedy says Jeff may have gotten some benefit from Vidaza but the results of last week’s bone marrow biopsy are disappointing.  He now has acute leukemia.  He  has 23% blasts in his marrow (up from 18%), the 5q deletion is still present and more chromosomes are involved.  There is a translocation of 17 and 20 in 15% of his cells. 

Beginning sometime next week, he will have in-patient infusion treatment of two chemotherapy drugs, Ara-C and Daunorubicin.  Side effects include hair loss (oh, well) and may injure the heart (oh, dear).  The drugs will be given over several days or a week and he will stay in the hospital for another three weeks or so.  The desired result, according to Dr. Kennedy, is “empty marrow.”  Following this course of treatment his bone marrow will be tested again.  If, after 2 (or more) biopsies, the leukemia is in remission, then he can have his bone marrow/stem cell transplant. 

Good news: 

The National Marrow Donor Program (NMDP) has found FOUR non-related matches (plus Paul as a back-up) and further blood tests are being done on the one they think is best. 

More good news: 

Jeff’s sister, Debbie, will visit for a week while Jeff is hospitalized. 

Pastor Wiseman is organizing an event to promote the bone marrow registry.  Stay tuned…

Jeff’s good humor continues.  He said, “Of course I have acute leukemia.  I wouldn’t get the ugly kind.” 

Prayer Request:

Pray for the beautiful donor who must, unfortunately, play the waiting game in parallel with us. 

The Munsters and the Significance of Others

Today Jeff had a biopsy to see whether he is ready for his bone marrow/stem cell transplant.  The procedure didn’t cause him too much pain.  His hip feels a little bruised tonight.  Results could be ready by Friday or Monday.  Maybe he’s finished with Vidaza treatments.  Maybe not.  Dr. Kennedy will consult with Dr. Porter and… we’ll see.  If we can’t stand the suspense, we could call Maria the Matchmaker at Penn and ask.

Jeff has always been good at identifying actors we’ve seen before and naming the movies or shows  they’ve done.  I am no good at this.  I only know when an actor looks familiar.  We received some good DVDs from the National Marrow Donor Program (NMDP) along with a packet of information.  We watched them the other night.  No actors; just real doctors, nurses, patients, caregivers, and social workers.  The patients all looked sick (go figure) and, although it was helpful, it was still difficult to watch.  A doctor with an impressive, pronounced widow's peak droned on - very informatively, don't get me wrong - about transplant this and recovery that...  I was about in tears when Jeff piped up, "I think he was in the Munsters!"

Among the many aspects of transplantation that we were told to consider (on these helpful DVDs) was to have a back-up caregiver in case I couldn’t do the job for some reason.  Jeff is excited at the prospect of choosing one or two “significant others.”  So, don’t all line up at once!  It turns out the job is a pretty big one.  We will circulate the DVDs to prepare prospective candidates.  Look for those hot titles in your mailbox and you’ll know whether you’re on the A List!

Jeff’s gray hairs don’t appear gray with Vidaza.  They’re darker and his hair is a teeny bit unruly.  The message here is:  He’s Still Got His Hair! 

And now the Hungarians!

I am delighted to add to my previous blog on the religions represented by those praying for Jeff:  the Hungarian Reformed Church of Roebling, New Jersey.  Thanks, Michelle (a co-worker at Rider University).

Things We've Learned

I opened the Emmaus Road newsletter, News From the Road, and learned that today is World Cancer Day (and Keith’s birthday – but we already knew that.)

http://www.who.int/mediacentre/events/annual/world_cancer_day/en/index.html

Dr. Kennedy told us that Paul and Jeff have 8 out of 10 haplotypes in common.  Nice!

The skin rash that has plagued Jeff for a year or two is called petichiae and is related to his disease, making that the first symptom of MDS that he experienced.  It appears on his legs and if you enjoy gross medical pictures, you can Google it.  No link provided here.

Thanks to Miss Coaches, Jeff’s high school Latin teacher, Jeff was able to pronounce petichiae properly on his first try.  Amy could not. 

http://www.merriam-webster.com/cgi-bin/audio.pl?petech02.wav=petechiae

Jeff’s treatment buddy, Marty, the Irish Dude, is named Daniel Martin, thus the confusion over his name – Marty or Daniel?  Marty arrived for treatment Monday using a cane and was deferred for treatment because he needed another blood transfusion.  Jeff still has not needed any.  Marty needs prayers, too.

Jeff should avoid salty foods although he seems to crave them.  If he indulges too much and then spends too much time on his feet, his calves swell and become rock hard.  He claims that it’s hard to tell if it's muscle or…

Jeff’s blood counts have been “excellent” according to the oncology nurses.  He brags about his “excellent” blood and boasts that his blood is the envy of… the cancer ward!  Some of his counts are actually in the normal range now, although low.  Kim says her dad looks like he is, “on the low side of normal.” 

Nick can not only rise early in the morning to drive Uncle Jeff to treatment, he is man enough to watch the injections!  He is a good companion, too.  Way to go, Nick!

It is worth advocating for yourself.  On Jeff’s request, Dr. Kennedy was willing to schedule this month’s biopsy early enough to possibly avoid the next course of Vidazzling.  If bone marrow looks good (or more scientifically, meets some medical criteria) and there is a match, he could conceivably have his transplant soon.  We'll see.  He asked Dr. Kennedy if he should stop trying to “align the stars.”  She assured him it was worth trying to get the results of the biopsy in enough time to schedule the transplant before - or instead of - the next course of Vidaza.  Matchmaker, Matchmaker, make me a match…