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.

Day 187 – Out and About and a Doggie Bag

Since I bragged about Jeff’s improved stamina, he needed a couple of days to rest.  The weekend was busy and fun - and tiring.  He spent last evening watching YouTube videos which may inspire him to do small projects in the shop – potential Christmas gifts.  When I got home from work today, I asked if he’d worked in his shop.  He said, “There wasn’t any time!”

Here is how he filled his day:  After some light cleaning he decided to get gas in his truck.  He drove across the bridge for better gas prices and then stopped at Heath Lumber to buy a board.  “No tin of cookies this year,” he lamented since he hasn’t been a big Heath customer as he had been in the past.  I assured him he’d survive without the treat.  In fact, he’ll have time to bake his own cookies!  Anyway, he was happy to chat with his ol’ pals at Heath and then headed to Doolittle’s Deli to pick up a sandwich for lunch.  My cousin’s husband, Craig, and their son, Eric, were both hard at work.  Jeff was glad to see them and they discussed the possibility of meeting for dinner sometime.  He crossed back over the river by way of Scudder’s Falls Bridge, came through Yardley, stopped at the bank and drove down Canal Street.  He has worked on many of the old houses on Canal Street.  He saw a customer/friend who invited him in.  They visited for an hour and a half.  He was glad he’d already picked up lunch because he needed to eat and get going to PT.  By the time he was done with PT there wasn’t much left of the day.  I’d say that was a day well-spent.  He loves to see people and his people like to see him. 

PT Mike says Jeff’s scapula is popping out again so he went easy on Jeff today.  Mike says Jeff has “good form” when he does his exercises; this is good.  Jeff exercises as often as he can stomach it and he is anxious to see some improvement.  He needs encouragement because it will take a long time.  He gets a little discouraged. 

Jeff lost another toenail but this one had a fully-formed, thin toenail underneath.  That’s good.  It won’t be so tender.  His weak fingernails look as though they are very close to being grown out but they keep splitting lengthwise, increasing the weak areas.  He says he is ready to glue artificial nails on.  I have experienced split nails before but only one at a time.  It must be so annoying to have multiple nails folding over and catching on things.  Jeff occasionally rubs and scratches my back – in exchange for the many, many back massages I give him (but who is counting?) – and his effort means a lot to me.  His thin nails don’t exactly scratch but I won’t tell him not to try. 

We went out to dinner tonight and Jeff could not finish his pasta dinner.  As we left the restaurant, he had a hang-dog look about him and said, “Here I am, carrying my shameful doggie bag.”  Yes, this is a new phenomenon – leftovers at a restaurant.  Shameful?  I don’t think so. 

Day 184 – Happy Half-New-Birthday to you!

Today is Jeff’s half-new-birthday; it has been six months since his BMT!  (Do you suppose Hallmark has a card for that occasion?)  Jeff says, “Time flies when you’re having fun!”  Of course, these last six months were not all fun and so we are especially grateful this Thanksgiving for Jeff’s good progress.

What a great Thanksgiving weekend - beautiful, warm weather, good food and good company!  Jeff took some risks but was able to enjoy turkey and all the fixings.

We had dinner with the Jones gang on Wednesday night.  We Skyped Daniel in from North Carolina and the rest of the young people were able to join us in the flesh.  It had been a long time since we all got together and it was Theresa’s first time at a Jones-Loux get-together.  Emily and Matt brought their two dogs and, with Lulu the wine stealer and Chester the cat, silliness ensued. 

Jeff and I worked the pancake breakfast to benefit Morrisville Student Loan Fund on Thanksgiving morning.  Jeff resumed his former job as french toast preparer after his hiatus during Vidaza treatments last year.  He lasted all morning and then went home for a nap before our drive to Havertown for dinner with Jeff’s brother’s family.  It was good to catch up with the young’uns, to see the cousins interacting as adults, and to spend time with Paul, Greg and Palmer.

I am pleased to report that Jeff’s stamina seems to be improving.  When Jeff undertakes a project, I know he’ll be heading for a nap or at least a rest when he is finished, but he seems to be lasting longer at his projects.  He helped Kim with an art project and then, with a little help from Keith, he welded Mark’s lawn mower deck.  The next day he helped the Boy Scouts set up their Christmas tree sale.  As he left the house that morning he told me, “I won’t be long.  I want to stay long enough to earn a doughnut.”  Keith reminded his dad that he should choose a doughnut from the box first, before all the scouts get their hands in it.  While Jeff was gone, I visited my parents with Kim, drove Kim back to the city, played with Mr. Maia - our grand-kitten, drove home, did several chores and still Jeff had not returned from the tree set-up.  I had been hatching a plan to go to the movies but as the afternoon wore on, I was becoming more and more disappointed because I thought he’d be too tired to go out.  He had been thinking about a movie night, too, and, when he got home, he suggested a movie date!  And so we went.  He stayed awake for the whole movie and he wanted to stop at a diner for dessert afterwards!

Jeff told me that he used the sledge hammer to set up the big posts at the tree sale.  I looked at him quizzically and asked how on earth he accomplished that without the ability to lift his right arm over his head.  I should know by now that he can engineer anything with whatever resources are at hand.  He said he stood on a stepladder and whacked at the stakes with the sledgehammer within his range of motion, then he went down one rung on the ladder and repeated until the stakes were in.  He assured me the posts “won’t come down.” 

Today Jeff, again with some help from Keith, raked the rest of our leaves, took a load to the borough compost dump, winterized the backyard, and grilled our dinner.  He was outside for hours.  When he came in, I noticed he was walking like he was sore – sore and happy.

In the last week, Jeff has had a flare-up of GVHD skin problems.  He has an itchy rash that looks like prickly heat except it isn’t raised.  There are some raised, dry patches that itch as well.  We have seen this before and know what to do.  He called Heather at Dr. Porter’s office to report it anyway.  The fingernail issues continue.  He often has three fingers wrapped in Band-Aids to prevent them catching on things.  Still, we are very, very thankful.  These are minor discomforts. 

In church this morning, I asked for prayers of thanksgiving for Jeff’s donor and prayed that she had a wonderful holiday, wherever she celebrated it.

Day 181 - Thanksgiving Letter

Dear BMD (Bone Marrow Donor),

I could not let Thanksgiving go by without sending you a giant “Thank You.”  Friday is my new half-birthday and marks six months since your marrow began flowing through me.  I think of you and what you did for me regularly.

I am doing well.  We had a family wedding in October and I danced like crazy!  I was not able to dance much at my son’s wedding in July although I was able to attend.  My family noticed a big difference in my progress between the July and October weddings.  At the October wedding, my brother-in-law said it was the first time in a long time that he looked at me and forgot I was a cancer patient.

I hope you and your family have a wonderful Thanksgiving.  I hope your family knows how wonderful you are.  I do.

Your BMR (Bone Marrow Recipient)

Day 177 – Fox Hunting and Use It or Lose It

Jeff and I were driving up our street around 11 p.m. last night, returning from a night at Rider’s theatre, when we saw a large animal in the intersection at the beginning of our block.  It was too large to be a groundhog and differently shaped.  It had to be a fox!  In 30 years at this address, we have seen opossums, skunks, raccoons, groundhogs, albino squirrels and the ordinary variety.  One time we had a couple of turkeys in our back yard that had escaped from Snipes Farm.  We have never seen a fox in our neighborhood.  I put the high beams on to illuminate the stranger and we watched as he went up our neighbor’s driveway.  As I took the foot off the brake and coasted toward our own driveway, Jeff said, “That makes two foxes on our block.”  Hmmm…  He’s a charmer, that one! 

In yesterday’s mail we received another well-timed packet from the National Marrow Donor Program.  Jeff flipped immediately to the section in the booklet entitled “Sexual Health” and, after confirming we are doing as well as can be expected – and maybe better than some, we began to read the thing cover-to-cover.  Reading the potential emotional issues that can result from BMT, we could see that Jeff is doing very, very well in terms of adjustment to his forever-changed body.  In the section on “Expectations During Recovery,” there is a description of the patient’s independence alternating with dependence for certain tasks or if the patient has had a setback.  It says, “It is not unusual for words of encouragement to sound like nagging if you are not up to the task.”  This provided an opportunity for us to discuss my changing duties as caregiver.

Jeff has been feigning (maybe, maybe not) annoyance at my suggestion that he perform his PT exercises twice a day.  Left on his own, Jeff would not do his exercises – they’re too uncomfortable - yet he has a strong desire to improve his mobility.  He is supposed to do them three times a day so I think I’m going easy on him.  I have heard him tell other people that I “get on him” about it.  Well, it’s my job, and I do it well.

Jeff was asked by PT Mike what his goal was for physical therapy.  Mike asked, “Would you like to get back to work?”  Jeff said, "I would like to be able to tuck in my shirt."  I’m glad that he doesn’t feel any pressure about returning to work although he refers to his volunteer work and the small projects he has done at my parents’ house as “work.”  He’ll say, “I’m working on Monday.”  This means he’ll have a couple of hours of useful activity with periodic breaks followed by extended rest.  And, as he says, when he gets tired of resting, he rests some more. 

The neighborhood fox(es) also brought to mind a goofy commercial:

http://www.youtube.com/watch?v=kb0kiiB3O-o

Enjoy!

Day 174 – No Day at the Spa and Check Out that Wing-Span!

Jeff went to Flourtown today for a massage by Val, my sister’s sister-in-law, who couldn’t wait to get her hands on him.  She gave extra attention to his shoulder, even somehow getting her fingers under his scapula!   I had described my one and only professional massage to Jeff so that I may have led him to believe the experience would be spa-like.  Between his shoulder pain and Val’s speaking while she worked, he did not relax enough to fall asleep on the table.  Val said his next massage would be different.  He made an appointment for next week.  Then he headed to PT in Yardley. 

PT Mike set Jeff to work on a behind-the-back-stick-lifting exercise and then went to work with another patient.  Mike had the 70-year-old woman touching a ball with her foot, then touch to the side, then back to the ball, etc.  Mike saw Jeff across the room and hollered, “That’s way too easy for you!”  The woman said, “Do you think so?”  Mike replied, “Oh, no, I meant him.”  Mike adapted the exercise by having Jeff put his hands closer together on the stick. 

Jeff and Mike discussed what would happen if his shoulder didn’t limber up with PT.  Apparently they put patients under and wrench the shoulder loose (I’m sure there is a proper medical term for that) and then immediately, the same day, PT begins so that the shoulder doesn’t seize up again.

When I got home from work, Jeff demonstrated his impressive wing span.  I shouted in amazement.  His right arm was almost as high as his left arm in wing-span position!  Jeff thinks he is going to be sore.  I hope he will be able to do his exercises at least once tomorrow.  

Day 172 – Frozen Shoulder, Great Hair

We might have celebrated Jeff’s last dose of Tacrolimus today if he hadn’t forgotten to take his meds this morning.  Unfortunately, with his improving health he sometimes forgets he still needs his arsenal of drugs.

Jeff started his physical therapy again today.  PT Mike did not recognize Jeff because he is so changed since his last visit!  Jeff told Mike that he gained an inch of height between the last two of Dr. Lee’s assessments (hospital discharge and post-100 days).  Mike saw improvement in Jeff’s strength but called his restricted arm movement “frozen shoulder.”  Jeff’s new exercises include the pendulum move which involves bending at the waist, letting the arm dangle and swinging it by moving the body. 

Tonight Jeff and I attended our first Gilda’s Club meeting, a networking group for people who have been touched by blood cancers.  There was a more popular meeting on palliative care across the hallway; our group was attended by only three of us plus the facilitator and an intern.  It was nice to meet Joann, a melanoma patient who is two and a half years out from bone marrow transplant - also done at HUP.  She was just now finding the need for a support group because she feels her friends and family, who have provided wonderful support through her ordeal, are getting tired of hearing about her ongoing side effects from pre-transplant conditioning.  She was truly sorry that Jeff had to hear her woes because she felt he should only be encouraged.  Evidently, she had a rough time with GVHD and had to continue to take Tacrolimus immunosuppressant for a long time.  She was weaned off of Tac just four months ago!

Joann’s donor was her brother, a sports fan.  Since transplant, she has developed a couple of new habits – watching sports on TV and swearing!  She attributes both of those habits to her brother’s marrow.  Well, now!  See?  That may explain Jeff’s new talent on the dance floor!  

Joann told Jeff repeatedly how great he looks for being only a few months out.  “You have hair!” she exclaimed.  Joann is a little younger than we are and has children around Keith’s age.  Among many other things, we discussed how our children have handled their parent’s life-changing illness.  It was good to hear her say things that Jeff and I have thought about and discussed only with each other.  We hope that we were helpful to her as well.

Our conversation brought Jeff’s donor to mind again.  Pray for her, please, and for Joann and her family.

Day 171 – Two Crazy Kids in Love

Nancy and Ken sent us an anniversary card that read, “It seems like only yesterday you two were a couple of crazy kids in love… And look at you now – still crazy, still in love.”  Thanks Nancy and Ken - and Hallmark. 

So these two crazy kids went off to Chadds Ford, PA, for a weekend romantic interlude.  We went to Longwood Gardens, a place we sometimes visit for our anniversary.  It is romantic and soul-soothing.  We seldom visit more than once in a year and we had just been there the week before Jeff’s BMT hospitalization in May.  However, Jeff wanted to see their garden railway (he keeps talking about putting one in our garden) so we started our tour there.  No matter how hard we tried to remember the Thomas the Tank Engine stories from when the kids were little, we could not name the green or red trains without the help of some 4-year-old boys who were quite happy to share their knowledge on the subject.  We also spent time in the conservatory and saw an amazing mum plant that had been trained into a metal frame, a perfect half-sphere of 718 blooms from one stem!  See the YouTube video about the mum plant, if you like: http://www.youtube.com/longwoodgardensinc#p/a/u/2/lXjqTFi5JVU.  We heard the huge pipe organ in the conservatory, the chimes from the chime tower, had lunch in the Terrace Restaurant and walked the forest and meadow trails.  Before we left, we circled back to have one last drool over the garden railway.  Jeff had begun to drag his feet with exhaustion.  It was time to leave.

We checked into the Brandywine Hotel and had a nap before dinner.  Years before – for our 8^th anniversary, maybe – we stayed at the same hotel and had an anniversary dinner at the Brandywine Inn which shared a parking lot with the Brandywine Hotel.  That meal, lo those many years ago, was somewhat disastrous.  When I took a sip of my daiquiri, I felt something hard in my mouth.  I pushed the tiny object onto my finger with my tongue and it cut my finger; it was a piece of broken glass!  Then the waiter started a fire without opening the flue and the huge kitchen fan drew the smoke into the dining room, choking us out.  We no sooner had been moved to another dining room when the waiter dropped a tray of food.  We laughed about it because it reminded us of our Hawaiian honeymoon and the many things that went awry on that trip; but maybe that is a story for another day.     

In the years since that memorable visit, the inn had been expanded, remodeled and renamed Brandywine Prime.  In its present transformation it no longer feels like an historic inn and there is no evidence of that fireplace.  Now it is a hip night spot with cool music playing over the sound system and a menu of beef specialties.  Jeff ordered a cowboy steak and very little else because he was determined to eat the whole 16 oz. steak.  I had filet mignon and french onion soup.  The food was outstanding.  We indulged in conversation about the future including delightful speculation about the heights of our not-yet-conceived grandchildren.

Sunday we visited the Brandywine River Museum and the Kuerner Farm where Andrew Wyeth spent a lot of time painting.  Jeff snapped pictures from the vantage points Andrew Wyeth painted the farm.  I was very happy to see that Jamie Wyeth’s pig was in town – that is, his portrait of a pig - and not in Paris as it seems to be whenever we visit. 

After a little antiquing, we headed home by way of Philadelphia for dinner with Kim.  We spent a little time with our grand-kitty, Mr. Maia, and then went to Twisted Tail, a pork joint.  Our waiter was an adorable young man who returned to our table twice to tell Kim that they were out of whatever Kim ordered.  Finally, he recommended the armpit sandwich which she tried and seemed to enjoy.  Jeff ordered ribs and never thought about how he would actually eat them with BandAids on four fingers.  We asked for rubber gloves which Adorable-Waiter fetched from the kitchen and delivered with a smile.

Today Jeff rested from our weekend trip and, he tells me, when he got tired of that he rested some more.  He did manage to make some appointments: one for the two of us to attend a Gilda’s Club meeting – a blood cancer networking group, PT for tomorrow and a massage on Thursday. 

This evening we spent a little time reading parts of my blog entries from around Day 25 when Jeff was discharged from the hospital.  He said, “If you think a month in the hospital is a long time, how about being married for 32 years?”  I like to think our 32 years of marriage were mostly better than a bone marrow transplant. 

Day 168 – Mr. Ed in New Britches

Last night I rested my hand on Jeff’s head as we lounged.  He took advantage of the opportunity to scratch his head by pressing into my fingers and moving his head back and forth.  It reminded me of a horse having a good scratch on a fencepost.  Those darn chemo lines on his fingernails are so weak that they fold over when he tries to scratch or do just about anything with his hands.  The splits catch on his hair and fabric.  He wears gloves when he does most chores and always has Band-Aids on the worst of his fingers.  His big toe now has half a thin nail; he always wears a Band-Aid on that one.  Two other nails are looking like they are separating, too.  It makes my blood run cold to think about it.  This annoyance is probably his number one complaint right now, followed closely by his alligator skin that requires lotion once or twice a day.

For several months I have offered Jeff gentle suggestions that he might need smaller underwear.  Tonight he proudly showed me his latest purchase, new britches one size smaller than his old droopy drawers!  He showed me the packaging and assured me that he would look like the guy on the front when he put them on, six-pack and all.  Even after buying them, he still wasn’t sure he needed the smaller size so he tried them on.  Perfect!  And, I have to say, he does have the cute “Pippa-butt” he brags about.  He’ll have to work on the six-pack, though.

Jeff has done a few projects in the last couple of weeks which have stretched his strength and stamina.  He cleaned up the pumpkin sale and repaired a section of fence at church, installed a door-knob on a new door and did some basement flood clean-up at my parents’ house, and checked a roof leak at church which required the use of a ladder.  Ladders are tricky to handle if you only have one good hand/arm and Keith and I came home to find the ladder on the floor of the garage instead of hung on the wall.  It seems Jeff finagled it down but could not put it back up. 

Sometimes when people hear Jeff is doing better, they indicate that they have projects waiting for him whenever he is ready.  He won’t be doing custom cabinetry anytime soon but these small projects give him a chance to figure out how to adapt.

Put Your Shoulder Into It

Jeff has decided that he needs to work on the damage that was done to his arm during his pre-transplant conditioning.  He would like to have a better range of motion with his right arm now that he is getting stronger and feeling better.  To compensate for his inability to lift his right arm, he has been doing more things with his left hand.  Jeff is willing to return to physical therapy since that helped before.  He had stopped going to PT this summer when it seemed to cause pain rather than reduce it.  Dr. Porter’s office set up an orthopedic visit.

This afternoon we went to the Orthopedics Department in the Silverstein Building at the University of Pennsylvania.  Jeff was instructed to arrive early for the appointment in case an MRI or X-ray was required.  We arrived plenty early and did not have to wait very long before being ushered to an exam room.  For kicks while we waited, we each took a guess at Dr. Heppenstall’s age since we had never met him before.  I thought he would be around our age and Jeff thought he would be younger than us.  Then Jeff took a short nap while we waited for the doctor.

A woman and an older gentleman came into the room.  The woman, presumably a nurse, sat at the computer to bring up the neurologist’s report from Jeff’s neck MRI this summer.  She made notes on the computer while Dr. Heppenstall used an old-school method of note-taking – a Dictaphone.  Dr. Heppenstall checked Jeff’s winged scapula which has improved a lot since he’d seen Dr. Pruitt, the neurologist.  Dr. Heppenstall was not too concerned with its present condition.  He asked Jeff to demonstrate his limitation of movement with his right arm and asked questions about his pain.  Jeff reported that he can avoid pain by not using his arm but he is concerned about losing the use of the arm if he continues to do that. 

Dr. Heppenstall did not require an MRI or an X-ray and, blessedly, he did not think surgery was called for.  He said that, with time, the shoulder and neck would continue to improve.  Jeff asked, “In my lifetime?”  Dr. Heppenstall said, “In mine!”  Jeff said, “You’re not that much older than me.”  Dr. Heppenstall replied, “I’m a lot older than you!  I just had my 70^th birthday party!”  

He ordered PT and told Jeff he would probably not need to return to see him.  Good news!  Now, for a little patience during the healing process…   

When we were finished in Orthopedics, we decided to visit the BMT nurses in Rhoades 7 – the ones who cared for Jeff in May and June.  When we walked out of the elevator and towards the nursing station, Nursing Assistant Alana and some other familiar faces greeted us with half-smiles and puzzled expressions.  They recognized me – but not Jeff!  Jeff told them to picture him without hair.  Alana spoke with us for a few minutes before she remembered Jeff and said, “You’re the carpenter!”  Nurse Linda joined Alana in animated praise for Jeff’s good progress and encouraged him to keep taking good care of himself.  I asked them to keep doing the good work they do.  Jeff reminded them that at the time of his discharge he’d told them, “Don’t take this the wrong way but I hope I never see you people again.”  They seemed really glad to see the results of their efforts. 

Prayers for the BMT patients at HUP today…

Day 164 – Around again to Oktoberfest

It has been over a year since Jeff’s diagnosis.  Tomorrow is the one-year anniversary of the start of his treatment with Vidaza.  And, of course, our blogging began around that time, too. 

One of our earliest blog entries was “Oktoberfest!”  I remember being in shock at last year’s Oktoberfest and thinking Jeff had a perpetual look of disbelief.  Treatment was to begin a couple days later and our family seemed unsure how to behave toward us. 

This year was different.  Although Jeff’s left-handed Bist du Stark effort was only 1:43 minutes compared to last year’s second-place win with 3:45, the evening seemed wonderfully usual.  Keith won the Bist du Stark competition for the Under 21 crowd with a time of 3:28.  There were the usual sauerkraut and bratwurst, German potato salad and spaetzle, music and dancing, and laughter. 

When the Jugengruppe (young) dancers came out banging the ends of long poles in rhythm for the Steckentanz (probably translates as ‘stick dance’), we wondered whether the poles would be used like limbo sticks.  Mark quipped, “A boy probably once said, ‘I wouldn’t touch that girl with a 10’ pole!’”  We laughed and then watched a dance that did not, in fact, involve the boys touching the girls except with those poles.  The poles were held horizontally between the boys and the girls and then were layered so that six or eight couples circled together.  The adults danced the Glocken Plattler which involves using cowbells in bell-choir fashion while dancing.  Since I call my family to dinner with a cowbell, Keith said, “This song makes me hungry.”

Kerry’s in-laws, Steve and Stephanie, were the newbies at Oktoberfest this year and they were very good sports.  Steph tried the Bist du Stark competition and was the woman to beat for most of the evening.  However, late in the evening two women bested her so that she came in third.  No prize was awarded for third but I think she still deserves bragging rights.  Steve felt the festivities put him in touch with his German heritage.  They both seemed to enjoy themselves and we enjoyed having them along.

Last weekend, at Melissa’s and Josh’s wedding, Harry told Jeff that it was the first time in a long time that he looked at Jeff and “forgot.”  I know what he meant.  With increasingly normal-looking hair and improved posture, you don’t immediately identify him as a Cancer Patient.  Unless you see him try to hold a mug, put on his coat or reach for his wallet, you don’t see any impairment at all.  And, hopefully, those issues will be addressed, too.  He’ll see a University of Pennsylvania orthopedist tomorrow.  We’ll see.

Jeff’s fingernails are still folding back and splitting.  He wears band-aids on the worst of his fingers because the splits are annoying.  He can’t wait for the weak spots to grow out.  It will be awhile yet, I think. 

Day 160 – Snowy Nuptials and Holey, Moley!

The wedding of my lovely niece, Melissa, and her awesome groom, Josh, was postponed on Saturday due to the freakish early snowstorm.  We were a few blocks from home when Nancy called to tell us there was no power at Silver Buttons Farm and that trees were down, roads closed, etc.  Poor Melissa and Josh!  We turned back home, relieved not to have to travel on the sloshy, slippery roads.  Jeff, it turns out, was still worn out from his doctor visit and catheter removal the day before and immediately went to bed.  Kim and I put on a pot of Butternut Squash Soup and played a game with Keith. 

On Sunday the barn still did not have power.  Generators and propane heaters were brought in so that the wedding could go on.  We worried that the barn would be cold so Jeff wore long johns under his suit.  It turns out the propane heaters, pot-bellied stove and lots of dancing all helped to keep us toasty.  Jeff could, amazingly, keep a beat and danced more than he has danced since maybe our own wedding 32 years ago.  I think his donor must be a good dancer!  In any case, he was dancing with joy and without inhibition simply because he could.  He was able to enjoy this wedding more than our son’s wedding in July.  The two events will forever mark his progress through early recovery.

The hole in Jeff’s chest where his Hickman catheter had been looks like a bullet hole, about ¼ inch in diameter.  It doesn’t appear to be healing over very quickly.  The skin around it looks artificial, like plasticine, due to its having been under a plastic bandage for six months with only brief exposures to air during the weekly dressing changes.  The area is still bruised and he is cautious about letting things – or people – touch him there. 

Jeff put work clothes on twice this week.  He needed suspenders to keep from dropping his too-large britches.  He looked at the leaky roof at church and he surveyed a church building that our congregation expects to take over.  He did more consulting than actual labor but I think he was happy to put on his ol’ uniform.  He has a couple more volunteer repair jobs to do and is glad to have a reason to get some of his tools out again.  I hope neither job will require a ladder because he had a little trouble loading and unloading one today.  Keith hung it back up in the garage for Jeff when he got home from school.

Maria from Dr. Porter’s office offered to make Jeff’s appointment with the orthopedist.  She set the appointment for Tuesday and it will probably involve an MRI of his shoulder.  I hope the orthopedist will have some suggestions for repairing the shoulder and hand or at least to give Jeff a little more freedom of movement on his right side.

I can’t go to the grocery store without running into someone who wants an update on Jeff’s health.  It is getting easier to say he is doing well; I don’t feel as if I have to be so tentative in my response.  It feels weird to be – I don’t know – hopeful?  Jeff and I made plans for an anniversary weekend get-away, close enough that Jeff will not be too uncomfortable traveling, and far enough away to make it seem like a real adventure.  Making reservations, even for the near future, was fun.  Looking forward… 

Day 154 – Fun in the City

You might as well go get a cup of coffee or tea, a glass of wine or your drink of choice because I am going to give you today’s blow-by-blow.  A snack might be in order as well. 

We planned to be on the road by 7:30 a.m. so Jeff had to take his pills earlier than usual.  After breakfast he dumped his eight morning pills on the kitchen table, poured a glass of water, straightened himself in the chair, folded his hands in his lap and set his jaw.  I laughed because it looked like he was facing off with an intimidating nemesis.  He said it is like training for a pie-eating contest.

When we got to the Perelman Center garage, we were surprised to see the entrance unmanned.  Without a guard to ask us whether we had business at the Perelman Center, it seemed as though they would let any ol’ riff raff in, not just members of the Cancer Club.  Oh, but then we saw him, down below in the relative warmth of the garage instead of out at the street.  “Can you tell me your business here?”  Ah, yes, there we go…

After our coffee and hot chocolate at Gia Pronto in the lobby, we headed over to the Ravdin building to pick up the last 14 Tacrolimus pills in .25 mg strength.  Our local pharmacy doesn’t have this strength; HUP makes them in a giant red capsule.  Jeff is on the penultimate dosage in the weaning regimen.

Then we went back to the Perelman Center to meet Dr. Lee.  Jeff had a strong desire to perform well on Dr. Lee’s final exercise assessment.  On the six-minute walking test, Jeff bested his pre-transplant performance by at least half a lap, doing 18.75 laps of 100 feet each.  Although this was done in a quiet hallway, a woman in strappy high heels walked in front of Jeff during the test and made no attempt to stay out of his way.  She stopped in front of one of the end cones that Jeff was trying to circle.  He had been instructed not to speak to anyone during the test and to pass anyone who might come by.  This woman was making it very difficult!  When she stopped in front of the cone (what did she think the cones and Dr. Lee’s stopwatch were for?!), I asked her to “Watch!”  She said she was lost and wandered off again.  I could tell by Jeff’s pace and the vigor in his step that he was MAD!  He was breathing audibly and started to drag his feet a little bit.  When we go for walks, feet-dragging is my indicator that it’s time to head home.  Anyway, he probably performed better because he felt he had to make up for lost time.

Two of Dr. Lee’s assessments were video recorded: the stand/sit 10 times test and the stand/walk-20-feet/sit test.  One test was to walk 20 feet “as though you are walking to the store.”  Jeff asked, “Should I walk quickly?”   Dr. Lee said, “That’s all I can tell you – as though you are walking to the store.”  When Jeff performed well, I decided he was pretending to go to the ice cream store.  He said, “Or the store sells trains.”

There were some balance tests such as standing on one foot for 30 seconds, grip measurements were taken on both hands and, lastly, Dr. Lee and Jeff went into a nearby bathroom for some skin-fold measurements.  Jeff said he was so sweaty from exertion that he had trouble getting his T-shirt off.  When he sat next to me to complete the survey portion of Dr. Lee’s study, I stroked his neck and face and found his skin cold; his sweat had done a good job of cooling him off.  His heart pumped hard for quite awhile.  Dr. Lee knew Jeff’s appointment with Dr. Porter was next, so he had us finish the survey in the waiting room of Dr. Porter’s office.

The surveys are Jeff’s least favorite part of the study.  There are several standard questionnaires on topics such as fatigue and pain, anxiety and depression, body image, and functional activity.  He answered the questions for the last 24 hours, the last 7 days, the last four weeks, on various rating scales - 0-4, never to always, 1-10, a little to a lot of the time. 

After the many, many pages were completed, Jeff and Dr. Lee discussed the ways in which this study will help future BMT patients such as designing PT interventions at particular key points of recovery and, of course, identifying areas for future study.  Dr. Lee reminded Jeff that he is entitled to see the results (those related to him, anyway) when the study is final.  We wished Dr. Lee “Good Luck!”

We waited another hour.  Finally, Jeff’s name was called.  Dr. Porter’s nurse weighed Jeff.  He lost another five pounds and had “grown” an inch.  He is back to his full 6’, thanks to his good recovery and improved posture.  Meanwhile, I went down the hallway towards Exam Room #21 and met Jackie, the nurse practitioner, along the way.  She lit up when she saw me and asked, “How is he?  How was Oktoberfest?”  I told her he is doing well but Oktoberfest hadn’t happened yet.  I asked whether it will be safe for him to go to such a crowded event with hundreds of people so close together.  She said, “He’s fine!  Go to Oktoberfest and have a good time!”  While I waited in the exam room, Jackie popped her head into the nurse’s station to tell Jeff that we had spoken and he was cleared to go to Oktoberfest.  Jeff informed her that he’d intended to go anyway, with or without permission.  Then he asked her to come see him in the exam room; he had something to give her.  Jeff and Jackie joined me in the exam room and Jeff presented Jackie with the wooden spoon he made for her.  The top looks like a syringe.  She asked, “You made this?!”  Yes.  She gave him hugs and kisses.     

We had another long wait in the exam room and we began to worry whether we’d get downstairs to Radiology in time for his 1 p.m. appointment to have the Hickman catheter removed.  I went out to the reception desk to ask whether someone could call Radiology and let them know we were running late.  The receptionist checked the schedule on her computer and said that Dr. Porter was with a new patient and would be in to see Jeff “very, very soon.”  I knew Jeff could wait patiently if he heard that a new patient was being seen.  How glad we both are to be on this side of his BMT.  By the time I returned to the exam room, Dr. Porter was there and they had already reviewed Jeff’s meds.  Dr. Porter teased, “Where have you been?  Jeff says you’re the one with all the questions.”  In an excited, delighted voice, Jeff said, “Guess what? I won’t need blood work except when I come here!”  What?!  Of all the scenarios we’d imagined, we never considered that his twice weekly blood draws would stop!  The Penn Home Infusion nurses thought that Jeff would need to go to a lab for his twice weekly Tacrolimus levels (and other labs) once his Hickman catheter was removed and until he was completely weaned off of the immunosuppressant.  We pictured trips to a Quest lab or local doctor’s office for actual needle sticks, but NO!  No need for the 8 different blood tests that have been done every Monday and Thursday for four months!  Stopped!  Just Like That!

We asked Dr. Porter whether he thought Jeff should see an orthopedist for his arm since he sometimes feels as if his arm is out of its socket and he still has limited mobility.  For example, he can’t lift his elbow to shoulder-height.  Dr. Porter agreed it might be worth checking out.  Jeff presented Dr. Porter with his syringe spoon.  He marveled that Jeff could have made it.  Jeff left a spoon for Heather, too.

Jeff went downstairs to Radiology while I checked out at Dr. Porter’s.  The receptionist understood our haste and offered to call me later with the date of Jeff’s next appointment.  Although I followed close behind, I lost Jeff at the elevator and did not find him in the waiting room in Radiology.  Good.  That meant they took him back right away.  I was glad I had slipped him a snack and some water during our long wait upstairs so he’d be alright even though it was well past lunchtime. 

While I waited for Jeff, I remembered asking him in the car this morning whether he’d been nervous about the removal of the Hickman Catheter.  He shook his head, then considered and said, “Not really.”  A year ago a procedure such as this would have filled him with dread.  Today… no big deal!  What a brave guy!  With Jeff’s answers to Dr. Lee’s Emotional Health questions fresh in my mind (high-scores for healthy), I thought of our Patient Jeff with pride.  I smiled at the thought of his sense of humor and his great outlook on his forever-changed life.  While I was thus focused on my brave man, Jeff was trying very hard not to pass out in the treatment room.

Jeff reported that the radiologist winced when he heard how long Jeff had had the catheter.  There is a piece inside that is “something like Velcro” which is designed to allow tissue to grow in and around it so that the thing stays in place.  Jeff is not fond of the Age of the Informed Patient.  He told the radiologist, “I am a wuss.  I’ll do better if you don’t tell me everything you’re doing.”  The doctor tried to keep quiet but, in fact, he needed help from Jeff in determining whether he’d numbed the proper area of Jeff’s chest.  He told Jeff the best way to get the Lidocaine in the right spot is to lift up the skin at the port site and…  Jeff began sweating and had to tell the doctor he was feeling woozy. 

The doctor alerted the nurse, Jeff said, with “some medical term for the-patient-is-going-to-pass-out.”  She was busy re-stocking the crash cart which had been used for the previous patient and she didn’t respond to his call.   The doctor called her again.  She still didn’t come.  Another nurse helped by lowering Jeff’s head.  The nurse later apologized profusely, explaining that she really thought the doctor was kidding because he couldn’t possibly have two pain-in-the-butt patients in a row!  Jeff’s pulse-oxygen and blood pressure were monitored for the duration of the procedure which, Jeff said, did involve some yanking, despite Nurse Susan’s insistence that no one would “yank it.”  The nurse prepared an IV for him but the doctor didn’t want to start an IV unless Jeff’s pulse-oxygen was less than 60%.  It was at 70% so the doctor said, “Good.  He’ll come around.”  The opening got only a BandAid but a large area is bruised.

The nurse had Jeff sit for awhile before he tried to get up.  When he thought he was ready, he began to dress.  He noticed his hospital gown had a lot of blood on it.  He reached for his T-shirt and instinctively lifted his shirt over his “pipes,” until he realized the “pipes” were no longer there.  He began to sweat and feel faint again.  He rested and took his time and finally he was able to join me in the waiting room.  He decided he wanted lunch at Pot Belly Sandwich Works across the street from HUP and was disappointed when I led him out the regular door instead of the revolving door.  I promised him we’d use the fun revolving door when we came back.  Which we did.

I stood near the button panel in the Perelman Center elevator and I asked the crowd of people, “Which floor?”  One man said, “We’re going to the garage.”  I asked, “Which floor?”  He looked horrified and asked, “There’s more than one floor?”  We talked him down from panic.  It was easy to figure out which floor he’d parked on and we directed him out of the elevator at P1.  When we reached P2, there was just one other person still with us, a man younger than us who said he’d been coming here for four years with his wife.  He shook his head and said, “Who’d have thought I’d get to know this whole place so well.”  We knew what he meant and added how easy it is to spot the newbies who have deer-in-headlight looks on their faces.  We remembered how surreal our first visit to the Perelman Center was.  

On the way home, we made a short stop to visit my parents and then we thought we’d drive by the nail salon in town to see if they were busy.  I’d suggested Jeff paint his nails to try to fill in his chemo splits but I never thought he’d go for a professional manicure.  The picks and splits must have gotten pretty bad, though.  How incredible to find my husband sitting next to me at the nail salon!  We explained his problem and asked if they had seen many cancer patients with bad nails.  “Oh, yes!” they said.  Three of the nail techs wanted to see Jeff’s nails.  The first thing his technician did was put what Jeff called “superglue” on his nails to fill the cracks and then she filed it down.  Whenever I looked over at him he had the strangest look on his face.  Evidently, he was feeling queasy. 

Jeff was finished before me and he waited patiently in the girl-dom for my French manicure to dry.  Keith called to say he had missed his ride home and might need us to pick him up.  He asked his dad, “Where are you?”  Jeff did NOT want to say exactly where he was so he told him, “In Morrisville.”  Keith called back a few minutes later to say a friend would bring him home.  Jeff asked, “Which friend?”  Keith answered, “Dave, one of the suite guys.”  However, Jeff heard, “one of the sweet guys” and was now even more reluctant for Keith to know where he was!  I know Jeff is going to be happy to have nails that aren’t catching on everything so I laughed when I realized that he considered this trip to the salon so hush-hush.  Ha!  I told him it was blog-worthy so he should be prepared for everyone to know all about his pretty manicure.

“Suite” Dave stayed for dinner.  It was the first time we had met him and he made a good impression with his good manners and wearing his ROTC army fatigues.  Nice guy; not “sweet.”  Apparently he was standing right next to Keith in the dorm suite when Keith described him as “one of the suite guys.”  Dave objected in an exaggerated low voice saying, “Whoa!” 

Kerry and Kim both called to check on their dad and to get the gory details - and to work out details for Saturday’s family festivities.  Snow is in the forecast for Melissa’s and Josh’s wedding day!  Tomorrow will be another adventure!