Day 215 – Claus Family Christmas

Jeff invited Kim and her cat, Mr. Maia, to stay with us for the Christmas weekend.  On Friday evening, Keith, Jeff and I drove down to Philly to pick them up, along with all the necessary kitty accoutrements.  We had dinner at a contemporary Chinese restaurant before leaving the city and, while we all enjoyed the meal, Jeff left feeling hungry and planning his next food fix.  One side effect of the steroids is an incredible appetite.  Oddly, another side effect is that his taste buds do not work properly. 

Mr. Maia did not settle in immediately and he kept Kim up most of that first night.  The next evening, Christmas Eve, Kim managed to stay awake through church but she could not stay up to see Kerry and Theresa late in the evening when they returned from their trip to Prague.  For the first time in their lives, no Christmas Eve picture was taken of the “children” hanging up their stockings!  Keith, our baby, is almost 20 years old so maybe it is time for that tradition to go.  Even as we welcome the formation of new traditions, Jeff is keen to participate in our long-held ones, like the Claus Family Christmas get-together.

Last night Harry and Linda hosted the Claus Family Christmas Extravaganza.  It was good to see my nieces and nephews and their significant others.  Jeff enjoyed talking to the young folks as well as those of our generation and my parents.  He talked to Josh and Melissa about the furniture he will make for their wedding gift.  He told my mother he would make dinner and bring it to them today.  He made plans with Judy to have an email exchange during the night since she also suffers from insomnia.  All generations of the Claus gang enjoyed watching a picture DVD I had made as a family gift, “1983-1992:  The Childbearing Years.”  As I have done for the last few years, I scanned photos from my parents’ photo collection, a decade or so each year.  The newest members of the family either enjoyed the slide show – complete with 80s music selected by Keith – or they were too polite to excuse themselves, evidence of their worthiness to join our clan!

This morning Jeff and I did our grocery shopping the way Kim does it in the city – on foot with a knapsack.  Last night I suggested we get up early and walk the mall but when we woke up this morning, Jeff saw the sunshine and decided it was not too cold to walk the neighborhood.  He suggested we make a shopping list for the meal he plans to prepare for my parents tonight and walk to the grocery store.  As we walked along, we planned our meals for the rest of the week and laughed, realizing that we wouldn’t be able to carry everything we’d added to our list.  Since we rarely – if ever – see anyone in our neck of the woods shopping with a knapsack, we thought we probably looked like we were running away from home.

Jeff walked briskly and without that dragging of the feet that signals to me that it is time to turn towards home.  He held up very well until we got home.  He laughed at himself as he climbed the three steps to the front door; he could hardly lift his legs to go up the stairs.  He unloaded the groceries and prepared breakfast - our second one of the day but who’s counting?  Oh, those steroid munchies!   Then he went down to the shop to work on a project.  He isn’t sleeping very well these days (steroid side effect) and yet he seems to be running on nervous energy.  I’m having trouble keeping up with him.

A friend of our family - Keith’s friend Michael’s mom - works for Johnson & Johnson and gave Jeff a very thoughtful gift:  several boxes of Band Aids from the company store.  Band Aids are frequently on our shopping list because Jeff still needs them to keep his thin fingernails from catching on things and folding back.  We were both so excited with the gift and Tami’s thoughtfulness!

And, on the subject of gifts, Jeff made me a beautiful cherry tea box with cubbies on the lid to hold tea bags and room below for six or more boxes of tea, spoons, strainer, etc.  He also made birdhouses – a church for Kim and, for Kerry and Theresa, a two-hole house with their wedding date for a house number, 7911.  He keeps turning spoons as gifts for people who helped him during his treatments or who have otherwise touched him.  He exudes gratitude and thanks me every morning for taking care of him.   

Day 211 – Step Up, Cutter! Step Up, Duke!

Jeff has been busy working in his shop making Christmas gifts.  I can’t wait to see mine!  He seems to last longer in the shop but he seems quiet – or tired, maybe – when I come home from work.  Maybe it’s a “good tired.” 

Tuesday night we went to Gilda’s Club where we met two other blood cancer patients and one spouse/caregiver.  When we introduced ourselves to each other, George pointed to his wife and said, “She’s the victim,” to which she, Connie, took good-natured offense.  He looked at us quizzically and seemed to ask, “Which one of you is the patient?” which may be a testament to Jeff’s fabulous appearance or my worse-for-the-wear visage.  It is good for both Jeff and me to talk to people and discuss issues related to cancer because, as another cancer patient described it, sometimes your family and friends seem to want to think of it as over and done with.  Wouldn’t that be nice?

Jeff’s physical therapy is going well.  On Thursday he was able to lift his right arm - by itself, without using his left arm to raise it - and place it against the wall at higher than shoulder-height.  After Jeff confessed that he doesn’t do his exercises at home very often, he asked Mike if he could schedule just one session between the holidays.  Mike agreed to it only when Jeff promised to do his exercises at home.  Whenever I remind him to exercise, he grunts as if to say, “but I don’t wanna.”  Then, mostly, he does not exercise.  Mike thinks he could have mobility and strength within a month if he works at it.

Jeff was looking forward to the Christmas Caroling Party at the Milionises’ this year.  Last year the gang came caroling at our house but we did not attend the party because some of the guests had colds.  It was a disappointment to miss it and that made Jeff’s anticipation of this year’s festivities more acute.  Annie’s poem-invitation said there would be a special surprise this year!  We wondered what the surprise would be!  Jeff couldn’t wait to go Christmas Caroling around the neighborhood.  It puts us in the Christmas spirit every year.  Besides, there is always good food and good company afterwards.  So, Thursday night we got in the car to drive the three blocks to Pete and Annie’s.  We rounded the corner onto their street and there, in front of their house, was a wagon decorated with evergreen garland and red bows - and hitched to the front were two gorgeous Belgians with sleigh bells tinkling as they tossed their manes and chomped at their bits!  Oh, what fun!  Annie told us that, as a kid, this was how her family caroled and she wanted her family and friends to experience it.  There were about 35 of us carolers and so, Annie told us, those under the age of 30 would ride for the first leg of the trip and we’d switch half-way through.  Any infirmed could ride the whole way.  I asked Jeff if he wanted to ride the whole way and he seemed almost insulted.  Others joined in, “Jeff, you can ride!”  He insisted he could walk, and so he did.  

 

When the young people were loaded, we set off, the wagon driver calling, “Step up, Cutter!  Step up, Duke!”  We stopped, as usual, at homes that were decked out for Christmas.  After a few stops, the wagon driver asked us how often we practiced.  We laughed and told him “Once a year!”  He was impressed because we have musicians in the group and so we have harmony.  Just when I was beginning to think, “When is it our turn to ride?” riders and walkers switched places.  I got on before Jeff and found a place to sit.  Jeff was one of the last to load and when he got on he saw that there was still a spot next to me.  He said, “I get to sit next to you!”  I said, “Ooo!  I was hoping you would!”  We shared a blanket - more for the fun than for the cold. 

Except for a little difficulty with walkers and riders singing in sync, I think we never sounded better.  At least we never had so much fun caroling!  After we had circled several blocks (our usual route plus a block or two), we returned to the Milionises’ house and took lots of pictures with Cutter and Duke.  Once their bits were removed we could offer them apples and carrots.  These are BIG work horses, weighing a ton each.  They are adorably affectionate with each other and extremely well-trained.  Interestingly, the young folk disappeared into the house for nourishment while the adults stayed outside, fascinated with the time it took to unhitch the team and remove their beautiful tack.  It didn’t seem as though these tall, tall horses would fit into the horse trailer.  The team was from Better Way Farm in Wrightstown.  On the weekends they offer rides through the light show at Shady Brook Farm.

Several of the guests remarked that Jeff has been on their church’s prayer list this year.  They, like everyone else, commented on his good looks.  It is always nice to have an opportunity to thank people for their prayers. 

Leave it to Annie to make a truly memorable experience!  She and Pete are wonderfully warm hosts and their home, inside and out, is a soul-soothing sight for their guests.  I can’t thank her enough for making this year extra special.

Day 203 – What?! No Ice Cream?!

Keith accompanied Jeff to the Perelman Center today for his visit with Dr. Porter.  I was busy at work, cramming the remainder of the year’s payrolls in before Rider’s holiday break.  Keith was happy to help and proudly wore his “The Dude Hates Cancer” T-shirt.  Dr. Porter liked it.

Nurse Heather discussed Jeff’s side effects with him and answered most of the questions I had written out so the guys wouldn’t forget anything.  Interestingly, Heather thought Jeff’s face gets red due to his skin having improved with the steroids; he doesn’t bother to apply his lotion as he should because it doesn’t feel as if it needs it.  She also said – horror of horrors! – that he should not eat ice cream!  His glucose could go kerflooey and he needs to watch his sugar intake to avoid kidney problems while on steroids.  She said he should not put sugar in his coffee - and no ice cream!  She felt that is the reason he has to get up several times each night.   

One of my questions was whether Jeff’s monocytes are still high because of Graft vs. Host Disease.  Heather said that was likely the reason.  Jeff is enjoying supple skin from the steroids and we wondered whether his nails would improve, too.  Heather said that is not likely.  Dr. Porter was happy to see that Jeff’s nails had shown improvement since his last visit, though.  Jeff sometimes doesn’t wear any Band Aids on his fingertips.  Still, the nails are thin and tend to split.

Jeff has been reporting his sense of taste is off (also a steroid side-effect) and blurry vision.  Dr. Porter wants him to have an eye exam after he is off the “’roids” as Keith calls them.  And Dr. Porter wants Jeff to take one less Prednisone pill per day for a week, then drop another.  He will stay on 90mg per day from that point until he sees Dr. Porter again in early January. 

 

The results of the engraftment/chimerism study are still pending.  They swabbed Jeff’s mouth again!  Dr. Porter and Heather reviewed the process for ordering the test and wondered whether they had been doing something wrong that prevented Jeff’s tests from being processed.

The Vidaza man, a fellow MDS patient, was in the office today so Jeff was able to ask him for his name (Kevin) and his phone number and email address.  Kevin drives himself to the Perelman Center from his home in south Jersey whenever he feels weak.  He doesn’t have to make an appointment; he just shows up and requests a blood transfusion.  He has had 70 pints of blood so far.  He likes to follow the news on MDS through the MDS Foundation based in Yardville, NJ:  http://www.mds-foundation.org/

Prayers for Kevin would be in order.

Late in my workday, I got an email from Penn Medicine letting us know that some of Jeff’s lab results had been posted online.  I checked some of his key numbers, a routine I can do quickly at this point.  My heart danced when I saw his hemoglobin was 13.2, the highest it has been since transplant – really, since last fall when we began measuring it regularly.  I debated calling Jeff with the news but I was busy finishing up for the day and wanted to tell him in person anyway.  When I got home, I asked Keith and Jeff, “Guess whose hemoglobin was 13.2 today?”  Jeff said, “Yours?”  Ha!

Some, but not all, of Jeff’s liver function indicators were posted.  It was fun to use the website’s graphing function to show Jeff that, through the miracle of steroids, those dramatic spikes were back down.  Thank God!

This week Jeff got his truck inspected (low mileage this year!), helped set up the stable at church, worked in his shop a little, did some Christmas shopping, took Kerry and Theresa to the train station for their trip to Prague, went to PT, and otherwise made himself useful.  He is feeling stronger and stronger and looks fabulous.    

Day 200 – The Munchies and the Miracle of Steroids

Jeff has the munchies.  Our friend Joyce (a two-time autologous bone marrow transplant patient out six years from transplant) warned me about the munchies, a side effect of steroids.  She also said Prednisone is nasty-tasting.  I did not share that information with Jeff until he reported the fact to me.  Then I told him, “I know.  And I’m sorry.”  Oddly, the steroids can cause tummy troubles, too, and Jeff is having trouble telling whether his gastro-gurgling (audible if you are within 10 feet of him) is due to the munchies (over-eating) or the drug itself. 

It is common for BMT patients to take steroids for GVHD for long periods of time - many months.  In Joyce’s case there was no risk of GVHD because she got her own cells transplanted.  There was no battle between the host/patient (herself) and the donor (herself).  She took steroids for a bad infection, though, and had some tales to tell.  I did not share all of them with Jeff but I did tell him that Joyce confessed to being grouchy with her spouse while on steroids.  We are forewarned.  I suggested that Jeff discuss side effects with Dr. Porter when he sees him on Friday.

Of course, we know that steroids can work miracles.  We don’t know if Jeff’s liver function is improving; that will be checked again on Friday.  However, we can see and feel that his skin is benefitting enormously from the miracle drug.  He told me last night that he kind of misses my once or twice daily application of lotion and backrubs but it is very nice not to be itchy all the time.  Hopefully, his fingernails and toenails will get stronger and less brittle, too. 

The first few days of Jeff’s “steroid use,” I noticed Jeff’s face was really red at times.  I told him it looked “ruddy” which he heard as “rut-ty.”  He thought he was growing ruts and ridges in his face but I was referring to the color of his skin.  In fact, it was so red that I was concerned and made him take his blood pressure a few times.  He came with me when I gave blood at the Morrisville Presbyterian Church and the nurse who screened me for blood donation took his blood pressure, too.  All good!      

We got email notification from Penn Medicine that Jeff’s lab results were posted online.  Even though we already knew the results indicated a strong possibility of GVHD involving Jeff’s liver, I was curious to see his counts.  His hemoglobin was 12.3 which is about as good as it has been but not quite normal.  Many of his counts are looking a little better but the liver panel numbers and monocyte counts were so dramatically elevated that a medical degree was not required to see that something significant is happening. 

Dr. Porter ordered a pulmonary function test to make sure that Jeff’s fatigue is not due to damage to his lungs from the pre-transplant chemo/radiation conditioning.  Jeff went to Aria Bucks County today to take care of that.  He did not have to go down to the city – yippee!  A baseline test had been done in the spring - between his two hospitalizations - in preparation for his transplant.  His lung function is greatly improved.  “Phenomenal!” the technician said. 

Jeff spoke with his hospital pal, Jeff R., and made a date for the four of us to have dinner together in January.  Jeff has a delightful southern drawl, had been a horseman of some kind, and has a healthy dose of spunk.  I expect that both he and his wife will be interesting dinner company.  

Day 195 – Rx +10!

I texted Jeff from work today to ask if he picked up his Prednisone from the pharmacy.  I wanted to know if his dosage would come in the size of the Predisone pills the kids used to take for asthma or if his would be giant-sized.  He called later in the day to report that the pills were about the size of an aspirin.  I said, “Good!  They’ll be easy to swallow.”  He replied, “But I have to take 10 of them, 5 in the morning and 5 at night.”  They are 10 mg each.  This is the “conservative” dose.

Here we are at the end of the school term and poor Keith got strep throat.  His friends were nice enough to have him stay with them to protect his dad from getting sick.  I sure hope Keith doesn’t contaminate any of them!  He slept the day away today, drank lots of tea, and took his antibiotic.  He will come home tomorrow.

Jeff went to PT this afternoon.  Unfortunately, his appointment was for 11:30 a.m.  Oops!  Fortunately, they were able to accommodate him.  However, he had to see Jeremy instead of Mike.  Jeff reports that Jeremy is a lot rougher than Mike and pushed his arm and shoulder to the limit.  He decided that was a good thing; maybe he should see Mike one day a week and Jeremy another since both approaches seem beneficial.

Kerry came for dinner tonight and to use his dad’s shop.  Jeff made his famous meatloaf, something I cannot manage to make very well.  Jeff’s meatloaf has spinach and ham rolled up in it like a jelly roll.  Very pretty!  Delicious, too.  It is very, very nice coming home from work to find dinner well underway.  I’m getting spoiled!

Day 194 – Vidazzled and Befuddled, Two New Friends - and Here We Go, Graft vs. Host Disease

Jeff went to HUP today to repeat his labs from Friday because some of his liver function indicators were high.  While he was sitting in the waiting area, he saw a man we had just seen in the office on Friday.  Jeff remarked, “You look good today.”  The man replied with a groan and said, “A half hour ago I was throwing up in the trash can.  A nurse got me cleaned up.  I just started a new drug called Vidaza.” 

Vidaza, if you remember, was Jeff’s first treatment last fall.  It is a disease-specific drug for Myelodyplastic Syndrome.  Jeff told the man he’d been on Vidaza.  The man leapt up, sat by Jeff, and exclaimed, “Then you have MDS, too!”  At age 76, this man’s only option is Vidaza.  Hopefully, he will have better luck with it than Jeff did.  Jeff guessed that the man’s disease is too far along or for some other reason he is not a viable candidate for a bone marrow transplant.  Jeff did not get his name although he wishes that he had.  We might see him again at Dr. Porter’s office but transplant patients are typically seen on Fridays, other patients the rest of the week, so it seems unlikely.

While in the city, Jeff decided to go to the Reading Terminal Market to see the train layout.  At Market East train station, an 18-year-old girl “latched onto” him.  What?!  He told me that she jabbered excitedly, a flibbertigibbet who “doesn’t know she isn’t supposed to talk to strangers.”  She said she was from Lancaster, that her father told her about the city and that she wanted to find Reading Terminal Market.  She kept saying things like, “I don’t know what I’m going to do!”  And she kept talking about her father.  She had been to the Comcast building but had not stayed to see the show!  Jeff told her that he was, in fact, going to Reading Terminal Market and that she could walk with him.  Evidently, she never stopped talking.  They looked at the trains together and then went their separate ways.  Later, while Jeff was eating lunch, he saw her talking to another man who seemed to be pointing out places in the market that she should see.  I let Jeff’s story about the young woman sit awhile and then asked him whether she might have picked his pocket.  He laughed and said the same thought occurred to him and he still had his wallet.  I asked Jeff whether she might have been an Amish girl on Rumspringa.  He thought not.  He does wonder whether she was a runaway or if she was simply exploring the city on her own with plans to return home at the end of the day.  It was probably the latter but why didn’t he ask her?  Inquiring minds want to know.

For all the excitement of Jeff’s excursion, he said he missed me today, “It wasn’t the same being in the city without you.”  Ah…

Jeff heard from his hospital walking buddy, Jeff R., this week.  Although Jeff missed the call, he was relieved to hear the voicemail because he had feared the worst.  He has been putting off making that call; now he can call without that worry.

Tonight Jeff heard from Dr. Rager with his lab results.  He needs to start on steroids for what they believe is mild Graft Versus Host Disease.  They hope the liver problem is GVHD (rather than damage to the liver from the pre-transplant conditioning).  Dr. Porter wants to start Jeff on a conservative dose, see how it goes and he’ll see Jeff in the office next Friday.  He might see some benefit to his itchy skin, too – maybe his shoulder, also?  They’ll run the labs again, I’m sure.  Jeff says, “Now I’ll look like Ah-nold.”  Oh, sure.     

How about we pray for the Vidaza man, Jeff R., and the enthusiastic young girl from Lancaster.  And, of course, my sweetie.

Day 190 – Rx Minus 3, Plus 1 and an Oops!

Disclaimer:  Another long one.  Get your drink of choice and settle in. 

Thursday night we went to the Kimmel Center to hear the Philadelphia Orchestra.  Marin Alsop, Music Director of the Baltimore Symphony (formerly of “Tracy’s” Colorado Symphony), conducted.  Although we went because I am a mini-fan of Marin Alsop, the program included an organ piece (Barber’s Toccata festiva for any of you in the know about organ music) performed by Ken Cowan, a Westminster/Rider University professor.  It had an awesome pedal solo (Look ma! No hands!).  A Copland clarinet piece and Dvorak’s “Sounds from the New World” were also on the program.

We had awesome seats in the cheapy section, Tier 3.  Jeff became slightly winded walking up all those stairs and the effort was worth it.  You could really see the violin- shape of the hall, something we could not appreciate the other times we had been there, when our pocketbook allowed for better seats.  As we entered the hall, the usher heard us talking about the view and told us the sound was good at this level, too.  In fact, the sound and view was a lot better than the time we had orchestra seats so close to the stage that we all wanted to go home and polish our shoes. 

Unfortunately, Jeff had showered and dressed for the evening while I was at work.  He applied lotion everywhere he could reach but I was not there to slather his back.  Between the two of us, we usually manage to keep his rough, dry GVHD skin fairly supple.  During the concert, his back started to itch.  I could see him doing the horse-on-a-fencepost thing on the back of his chair.  I rubbed his back during intermission; I didn’t feel it would be appropriate to un-tuck his shirt and scratch his back but we both wished I could. 

We spent the night at Kim’s place in the city since Jeff had an appointment with Dr. Porter at HUP in the morning.  Kim gave us her queen bed and she took the pull-out sofa in the living room.  I had stayed with Kim for six weeks when Jeff was hospitalized; this was Jeff’s first time as Kim’s overnight guest.  He enjoyed himself so much that he announced in the morning, “We have to get you into a two-bedroom apartment!” to which Kim only rolled her eyes. 

Kim asked us whether Mr. Maia bothered us through the night.  Jeff said, “Not enough.”  Mr. Maia is a fun cat – playful and social, a good companion for Kim.  Kim fed us a lovely breakfast and off we went to HUP.

Jeff had labs done and then we waited, as usual, a long time to see Dr. Porter.  We don’t mind the wait because we know what it is like to have his full attention.  The time and care he takes is necessary to understand the disease, treatments, side-effects, potential side-effects, etc.  It is a lot to take in.  We think he must wait for some of the labs to be processed before he sees his patients.  Thus, the delay.  Even though we respect Dr. Porter immensely, visits to his office can still be a little traumatic.  If I forget to take something for us to do, a crossword puzzle or something to read, I get punchy waiting in the exam room.  I try to be patient while waiting with Patient Jeff who may or may not be feeling anxious himself.  Today, evidently, every time I felt anxious, I would lean over and plant a kiss on Jeff’s cheek.  I didn’t realize how often I’d done that until he complained, “Stop kissing me!  Scratch my back if you have to touch me!”  Which, of course, I did and the activity was calming – maybe for both of us.

Jeff sat in his chair, hands on knees, head in hands, staring at the floor.  He said, “Gross!  Someone trimmed their nails in here!  Who would do that?”  Sure enough, a collection of fingernails was scattered on the floor.  It didn’t seem fair, Jeff thought, that he can’t grow good nails and there someone is cutting them off and leaving them on the floor!  I suggested he collect them to glue on his own fingers. 

Finally, Dr. Alison Rager Segal (not sure of the spelling of her married name) entered the exam room.  I thought, “I know her!”  She was the oncology fellow who was present during Jeff’s transplant.  She identified herself just that way but I remembered her very well.  Now she works for Dr. Porter.  Later, Dr. Porter asked Jeff whether he remembered her.  Jeff wasn’t in great shape that day so he only thought she “looked familiar.”  He says all he remembers about transplant day is “that 2.5 litre bag and everyone parading in, thinking it was a big deal.”

Dr. Rager updated Jeff’s medicine list and we discovered we did not do the last two weeks of Jeff’s Tacrolimus taper!  Whoa!  How could we have done such a thing!  Each week when we load his medicine box, I pull out the list of medicines to make sure we get it right.  I guess after a time you think you know the routine so well and there hadn’t been too many changes for awhile except for the taper.  We skipped the every-other-day dosage, the last leg of the taper.  Jeff said he didn’t remember ever talking about every other day – and neither did I - but it was on one version of our instructions very clearly!  (We saw later that it was not on the version we were using to load the pill box.)  Not to worry, Dr. Rager said, since Jeff didn’t appear to be having any difficulties.  When Dr. Porter joined us later, he said his taper was a little fast, that it wasn’t uncommon for the taper to take a full year. 

Dr. Rager asked Jeff about his arm.  Jeff described trying to put on deodorant by grabbing a wall to stretch his arm out straight enough to expose his armpit.  I told her that PT Mike asked what his PT goal was and Jeff’s response, “I’d like to be able to tuck in my shirt.”  So when Dr. Rager asked Jeff to un-tuck his shirt so she could check his skin, she jokingly offered to help him tuck it back in, if necessary. 

I asked Dr. Rager if the results of the engraftment study, aka chimerism test, were known.  This was one of the tests that had been ordered at the time of Jeff’s last bone marrow biopsy in September.  The results weren’t back yet when we last visited in October and Dr. Porter didn’t know the reason for the delay.  Evidently, something happened to the sample so the test would be repeated with, thankfully, blood drawn today in the lab (no biopsy required!).  She also swabbed his cheek again in case the problem was that the lab didn’t have enough of Jeff’s cells to compare to the blood sample.  They are looking at how many of Jeff’s blood cells are his donor’s (hopefully 100%) and how many are his own.  This can take time to completely change over and they need donor DNA and Jeff’s own to compare.

We discussed Morrisville’s notice about a problem with TOCs (Total Organic Carbons) in our drinking water.  Dr. Rager said that although it isn’t good, she felt short-term exposure would not be harmful.  The notice from the water department said, “You do not need to use an alternative (i.e. bottled water) water supply.  However, if you have specific health concerns, consult your doctor.”

Dr. Rager and Dr. Porter consulted together about Jeff’s labs and complaints, etc. and then rejoined us in the exam room.  They decided that Jeff could have a flu shot since he is no longer on Tacrolimus.  The rest of his immunizations will be done at one year post-transplant.  Jeff should have a pulmonary function test in case his fatigue and occasional shortness of breath are due to lung damage from pre-transplant conditioning.  We need to watch for skin changes that would indicate a greater degree of GVHD and require intervention.  Dr. Rager suggested Benedryl at night to help the itching (an additional 1 pill).

Dr. Porter took a harder view of Morrisville’s drinking water issue which is expected to be resolved “within the 4^th quarter of 2011.”  He wouldn’t drink it himself!  We showed him the notice to ask whether Jeff should be drinking bottled water and came home wondering whether any of us should be!  Jeff, however, says, “Pooh!”  Hmmm.

Not all of Jeff’s labs were back yet so Dr. Rager asked me to call later in the day to see whether his magnesium was good.  If so, he could reduce his daily pill consumption by three.

We sat in the infusion waiting area so Jeff could get his flu shot.  For some reason they wanted to give it to him at HUP.  We saw a young woman who was masked and gloved playing Words With Friends on an iPad.  Jeff commented about the game and I confessed I am addicted.  Her father laughed and said he was playing her on his iPhone while sitting next to her.  When she went into the infusion area for treatment, we chatted with her father.  We learned she is a 24-year-old high school teacher from Lancaster County.  She started at Hershey Medical Center and they went to Johns Hopkins for consultation when she was diagnosed with AML.  However, he said, they don’t do stem cell transplants there so they came to HUP.  Her donor was a 25-year-old male.  Her father was so impressed by this, “What young person thinks about being a bone marrow donor?”  Jeff told him about the military providing extra leave time to soldiers who get on the registry and end up becoming donors.  The young woman must have had a so-called “mini-transplant” because she had her pre-transplant conditioning at HUP (something like half-strength of what Jeff received) and then went home!  Remarkable!  Her actual transplant, like Jeff’s, was like a blood transfusion but it was done at home!  Just incredible!  She seemed to be doing really well and we wished her the best.  As we went our separate ways she called, “Only 44 more days to go!” referring to her first 100 days with restrictions. 

When we got home, we called Dr. Rager to check on Jeff’s magnesium level.  I guess since we’d stopped the Tac two weeks early, his magnesium was high.  In any case, it is no longer necessary for Jeff to take oral magnesium (three fewer pills per day).  Dr. Rager said she hadn’t completed going over Jeff’s labs but his creatinine was high (1.5) so she might be calling back with further instructions.  I told her we’d push fluids in the meantime.  She said his WBC was 4.5 (in the normal range), his hemaglobin was 12 (below normal) and his platelets were good at 206,000. 

While we were out of the house for the evening, Dr. Rager called to report that they do want to see Jeff next week to repeat the liver function panel.  Jeff says, “All those years of NOT smoking and drinking is finally catching up to me.”

I often think of what Dr. Rager said to me in May when I asked her, “Why oncology?”  After pausing to collect herself, she said, “There is still so much work to do and cancer patients are special people who seem to rise to the occasion.”  Please pray for oncology doctors, nurses, researchers, the young woman we met at Dr. Porter's office and all other cancer patients as well as though who are experiencing cancer scares, waiting for results.