Day 308 – The Mystery Woman Speaks!

Let’s first get medical news out of the way.  Jeff’s labs this week showed better liver function and Dr. Rager laid out a slow taper for Jeff’s Prednisone, 5 mg less every two weeks, and wants labs done again in a couple of weeks.  A lower dose of steroid is good because Jeff is having some sleep issues and all the other lovely lovelies of steroid use.  (He was even beginning to get a little cranky again although I did not mention it to him.)

Now for the exciting news!  Joanne at Dr. Porter’s office faxed a three-page letter from Jeff’s donor to my work fax number – after I had left the office for the day!  No problem, I was returning to campus for class; I’d sneak into the office to get it.  Well, I wouldn’t exactly sneak in since I would probably have to call facilities and let them know what I was doing.  Anyway, none of that was necessary because my co-worker brought the letter home with her and I only had to pick it up from her house which is one block from ours.

The letter is dated July 27, 2011!  How odd!  Mystery Woman mentioned receiving several of our letters so what was the delay in our receiving hers?  If we had received this letter last summer, it would have alleviated some concerns we had about Mystery Woman’s recovery.  Jeff often wondered whether his donor was reluctant - someone who had joined the registry years ago, forgot about it and, perhaps, regretted being called.  Oh, how nice it would have been to have this wonderful letter last summer!

Just getting the letter was all so very exciting but I guess you are wondering what Mystery Woman had to say.  The letter began, “Dear Blood Brother,” and described her inspiration, a baby cousin who died of Leukemia when he was 28 months old and she was 15.  The little boy’s sister had twice given him bone marrow (I want to know more about her – How old was she each time?  How was she influenced by the experience?)  Mystery Woman’s mother helped her with her grief and told her, “God has plans for all of us and we may never know the reason but {censored cousin’s name} had an impact on many lives…”

Mystery Woman is a triathlete who met her husband, a marathoner, while both were volunteering at a {censored organization name} charity event.  She considers meeting her husband, as well as the births of each of their two children, among the many blessings that derived from her young cousin’s short life.  Ten years ago she and her husband (they were not yet married) were at an {censored name} event.  One of the runners was a cancer patient in remission who was holding a bone marrow drive.  They decided to stop by and have their cheeks swabbed.  Nine years later, when Jeff needed her, she had moved and changed phone numbers as had all of her contacts.  Her aunt got the word that she was needed. (Which aunt, inquiring minds want to know?  Perhaps it was the mother of her little cousin?  Or was it another aunt?) 

Mystery Woman addressed our silly question, “Do you have any useful traits that Jeff might gain from your marrow?”  She is not a dancer but can “hold her own.”  She says she has a great sense of direction and is stubborn, or “determined” or “willful” as she prefers to think of it.  Jeff says those are traits he has always had, too, so he is happy to know that they have a lot in common.

She writes that we may have felt that she gave Jeff a gift but she is honored to have been able to help our family and allow her little cousin to live on.

Beautiful!  We loved Mystery Woman before and even more so now that we read her kind words.  She was not a reluctant donor at all – nor a prisoner, as it turns out.  She was an enthusiastic donor, still felt good about it afterwards and the tone of the letter makes it seem likely that she will want to meet us when it is permitted.

By the time I had collected the letter from my co-worker, Jeff had returned to Kerry and Theresa’s house to finish up installing oak flooring in their upstairs hallway in preparation for Kerry’s crew this weekend.  So I had to read the letter to him on the phone.  He put me on speaker phone so that Kerry could hear it, too.  About half-way through I told the guys, “Hold on a minute.  I’m dripping on the letter.”  I dabbed my eyes and blew my nose.  When I got back on the phone, Kerry said, “Maybe if you drip on one of those black marks, we can read what is underneath.”

Kerry is busy trying to see if the censor(s) missed any identifiers.  He considers it a challenge.  Jeff and I are contemplating the many things we want to say to Mystery Woman in our next letter.  We wonder what she thought when she read our letters which never acknowledged hers! 

Mystery Woman and her family began praying for Jeff and our family as soon as they learned Jeff needed her.  We began to pray for her and her family at that time as well.  I always thought it was likely, at age 35, that she was a mother of young children.  Her children were one and three years old at the time of Jeff’s transplant.  Now that we know some particulars, we ask our team to continue to pray for her and her family.  Pray that their kindness and generosity are so contagious that others are compelled to join the bone marrow registry as well so that more and more people can potentially be helped.  Pray that Mystery Woman feels our gratitude every day and let her know that we value the short life of the little boy who set her on the path that intersected Jeff’s. 

 

Day 306 – Dermatological and Donor News

This morning Jeff had an appointment with a dermatologist at the Perelman Center.  We decided to take the train even though Jeff is immuno-suppressed and must avoid being around sick people.  We arrived early enough to stop at Dr. Porter’s office first to have Jeff’s labs drawn.  (We probably won’t have the results of his liver function tests until tomorrow.)  From Dr. Porter’s, a stop at Gia Pronto for coffee and danish, then on to dermatology.

In the waiting room we chatted with a woman whose daughter is on steroids and immunosuppressants following four – count them, four! - liver transplants.  Her first transplant was with a liver that was not a great match but it saved her life.  I don’t remember the reasons for the subsequent three transplants. 

We were taken back to an exam room where a nurse screened Jeff briefly.  Then Dr. Winnott entered the room and remarked that she had met Jeff last year around this time in preparation for his transplant.  She said she was puzzled, though, because she is usually really good with faces and although she read through the visit notes and remembered his case, she didn’t remember him.  We told her that could easily be explained.  She saw him after he was treated for leukemia and he had no hair and was much thinner than he is now.  Also, he now has that steroid-puffy face.

Dr. Winnott examined Jeff’s skin all over.  I asked her about the spot on his back which erupted with a grayish ooze sometime during his first 100 days and then turned into a crusty blackhead and stayed that way, never healing completely during the ensuing months.  She said, “That’s exactly what it is, a crusty blackhead!”  She said it is probably the start of a cyst but it is nothing to be concerned about.  She didn’t see anything else notable.  

I told Dr. Winnott that Jeff had recently confessed that he stopped using the lotion with sunscreen that was prescribed following his transplant.  He needs to use sunscreen all the time because he is on more than one medication that makes him particularly susceptible to sunburn.  Dr. Winnott reinforced this by repeating the warning several times, telling him it warranted repeating several times.  She said that while taking the anti-fungal medication, Voriconazole, even walking to the mailbox once unprotected could result in a burn.  Besides Voriconazole, he also takes an antibiotic that can cause sensitivity to the sun.  So, sunscreen is a must!

Dr. Winnott examined his finger- and toenails and Jeff removed his Bandaid so she could see his bloody fingernail.  Yesterday he whacked a finger with a hammer-stapler at Kerry and Theresa’s house and his thin nail split horizontally about ¼” long.  She recommended a vinegar-water bath twice a day to prevent infection.  It will take a long, long time to heal.  She told Jeff that, “We only have to protect you from yourself and the sun.”  He will not need to see her again for a year unless his fingernail gets infected or some other change occurs.

When we got home, there was a voicemail from Joann at Dr. Porter’s office.  Joann is the donor-recipient coordinator and is the only one on Dr. Porter’s staff who is permitted to know the identity of the bone marrow donors.  Her message said that she had a letter from Jeff’s donor and was sorry that she missed us when we were there this morning.  We were to call her and let her know whether we wanted the letter faxed or mailed.  Jeff and I discussed the quickest way we could get our hands on the letter.  I called Joann back but she was gone for the day.  I left a voicemail that said, “Jeff would like the letter scanned and emailed so we can have it fast but since that wasn’t one of the options you offered, please fax it to my work and maybe mail it, too, and…  Oh, we’re just so excited to get it, we want it in any way, every way.” 

As we get closer to Jeff’s 1^st birthday, we have been thinking about the donor often.  We wondered what we could write to encourage her to complete the paperwork approving contact after the one-year anniversary of the transplant.  Now she has written Jeff for the first time!  We can hardly wait to see what she has to say!  Jeff had heard that the bone marrow registry was originally built with military personnel and prisoners.  He joked, “They must be letting the prisoners write now.”

Jeff did something to his back, maybe stepping off the sidewalk onto the driveway at Kerry and Theresa’s but he isn’t sure.  He lists a little to his left when he walks; it looks like he has pain with every step.  Also, he has noticed that he sweats profusely which is unusual for him.  That is due to the water retention caused by the steroids.  Between the sweating and his sore back, he looks pretty ragged whenever he exerts a little.  The additional meds are causing him to feel fatigued and yet not able to sleep well at night.  Through it all, he is a trooper!  He remains pretty cheerful and is easy to be around. 

Day 293 - Setback, Moving Forward

It has been so long since I blogged (2 weeks!) that I had no idea what number day it is.  I have been apologizing to people, “I’m sorry I haven’t blogged lately but there is no significant change.” There really hadn’t been any change in Jeff’s recovery – for better or worse.  The same old issues were still there – nails, some fatigue, shoulder/arm limitations, shoulder blade muscle spasms, and steroid side effects including puffy face, large muscle problems, and incredible appetite.

Today, however, there is something to report.  At his first solo visit to Dr. Porter’s office yesterday, Jeff was given instructions for the next taper of steroids, dropping 5 mg every other day, keeping that dose for two weeks before dropping another 5 mg, and so on.  However, today Dr. Allison Rager called to say his labs showed his liver not functioning as well as they would like and that his steroid dose needs to be increased (doubled), back to 40 mg per day.  She also is adding back his immunosuppressant, Tacrolimus, which he hasn’t taken for three and a half months.  This means he will have to be careful again about being around sick people.  Dr. Rager said she is very frustrated by this turn of events but Jeff’s attitude is, “It’s fine.Just tell me what to do.”

Recently a co-worker asked about Jeff and commented that it must be very frustrating for him to not be able to do the things he used to do.  I told her it doesn’t seem to bother him too much.  Doing projects at Kerry and Theresa’s house provides an opportunity for me to see what Jeff can do and how he handles challenges.  It is a sort of proving ground for him, too, I suppose.  I am comforted that he seems to know his limitations and does not jump into things with more enthusiasm than he should.  He has noticed that his shoulder blade does not hurt too much when he does pushing jobs like spreading spackle, although there isn’t the same degree of oomph behind his stroke as there used to be, particularly when he is reaching overhead.  Maybe spackling will improve his strength.  Pulling motion like pulling carpet staples, on the other hand, sets his shoulder muscle into spasms.  He told me that he stopped pulling staples to do some of his PT exercises in an effort to stop the pain.

Theresa’s parents are coming this weekend to help prime the walls.  Flooring has arrived.  Kim is coming this weekend to consult with Kerry and Theresa on their paint color choices.  It is all so much fun!

Jeff and I think about and talk about his one-year anniversary a lot.  This leg of his recovery has been notable mostly for its lack of significant change and we look forward to the one-year milestone with more delight than anxiety.

If you are sending prayers Jeff’s way, please pray that his GVHD settles down and leaves his poor liver alone.

Day 277 – Pills and Projects

In the last week, Jeff managed to goof up his pills twice.  On Saturday evening, when his pill box should have had two evening pills left for the week, he had no Saturday pills left at all.  However, his Wednesday evening box still had two.  He thinks he missed the Wednesday evening pills altogether and then took evening pills twice on Friday night!  The evening pills are only prophylactic anti-viral and anti-fungal so it was probably no big deal.  We both laughed about it but vowed to pay attention to what he takes each morning.  It might cause a problem to goof up his Prednisone doses.

Jeff has successfully tapered to 20 mg of Prednisone per day.  He will stay on that dosage until he sees Dr. Porter again in a couple of weeks.  Dr. Porter had said that side effects will diminish at 20 mg so, hopefully, Jeff will have relief soon from the cramping in his fingers, weak leg muscles, puffy face, gargantuan appetite, etc.  He has been tired lately but I don’t know whether that is due to the Prednisone.

On Monday morning, Jeff carried his latest project downstairs to the shop in case the podiatrist caused him too much pain to carry it down after his appointment.  Dr. Schnitzer had previously instructed Jeff to trim his nails straight across but the “baby,” ingrown big toenail required careful trimming on an angle.  Dr. Schnitzer is a kidney transplant patient so the two of them compared war stories.  Dr. Schnitzer was very concerned about Jeff’s condition and suggested he look up Cushing’s Syndrome, a risk of long-term steroid use.  Jeff wondered whether he was suggesting Jeff should allow his GVHD to run amok.  Jeff called me at work with a report on the visit, “I paid $25 to have two toenails trimmed.”  At least they don’t hurt.

Jeff’s truck was in the shop for several days for some warranty repairs on the transmission.  We were doing some car-sharing. I car-pooled with a co-worker for a couple of days so he could have my car.  Keith and I were driving home from Rider one night when I asked him to call his dad.  I knew Jeff was preparing homemade pizzas and that he hadn’t had a car to run out for ingredients.  Keith asked his dad whether he needed us to stop for supplies.  No.  Jeff had everything we needed.  Keith hung up the phone as we turned onto our street. 

As we neared our house, I told Keith that Dad did our laundry and noticed that my pants needed to be hemmed.  He took care of those pants right away!  I would have kept a pile of mending to take care of when there were several things to repair.  I related a conversation Jeff and I had had.  I remarked that Jeff was a better homemaker than I ever was when I was working part-time.  Jeff had been nice enough to say, “You were taking care of children, too, though.”  I told Keith that his dad was always the kind of guy who would fix something as soon as he sees the need.  I pulled into the driveway and pushed the remote to open the garage door.  As if on cue, Jeff’s wheelbarrow came into view behind the garage door, occupying the space where the truck is usually parked.  It was disassembled, the tub inverted on sawhorses and freshly painted.  Keith said, “Like a wheelbarrow, for example?”

That impulse to fix things sometimes wanes mid-project.  We have about 40 bathroom floor tiles which have been marked with X’s.  They have been that way for about a week and we have gotten sort of used to the look which is reminiscent of chicken footprints.  The marked tiles are, I am told, going to be replaced.  I have faith that they will be, someday. 

Yesterday Kerry & Theresa had settlement on their new house.  They presented Jeff with a key.  I wonder which projects will appeal to Jeff first – our floor tiles or something at the new house.  We’ll see! 

Day 270 – Lenten Sacrifice?

This weekend Jeff washed my car and trimmed the grapevine.  On Monday morning he took the train to the Perelman Center for his labs and then waited in the freezing cold at the University City train station for 40 minutes.  There is a roof there but not a good inside waiting area.  He was cold and very tired when he got home.  Maybe it was all the fresh air he had been getting that caused him to nap Monday afternoon. 

He regularly falls asleep within minutes of sitting down to watch TV and so I suggested he stand up to watch a movie he wanted to see.  Surely he wouldn’t fall asleep while standing!  He didn’t take my advice but, with effort, he was able to see most of the movie with his eyes open.  He sleeps soundly (and occasionally snores very loudly) in the early evening but still cannot manage to sleep all night.

Jeff’s sore toe prevents him going for walks with me and limits his activities a little bit in other ways.  He made an appointment with the podiatrist for Monday.  Hopefully, he can get active again very soon thereafter.

Many people are noticing the effects of steroids on Jeff’s face.  He calls it “chipmunk face.”  Most people comment that he looks healthy nevertheless.  Our neighbor, who has limited command of the English language and yet favors the versatility of the F word, asked Jeff, “What the !%&# happened to you?!”  I guess Jeff does look quite changed on some days. 

I was beginning to think it was about time for us to get another newsletter from the National Marrow Donor Program (BeTheMatch.org) when the next issue arrived in the mail.  Jeff was starting to talk about how time flies and that before we know it we’ll be celebrating the one-year anniversary of his transplant, his “first birthday.”  The newsletter’s focus was on “Your One-Year Anniversary” and “Preparing for Your One-Year Exam.”  There was a good article which answered some of our questions about Social Security Disability benefits and another called, “Initiating Contact with Your Donor.”  All good, timely stuff. 

I asked Jeff whether he would give up ice cream for Lent as he has done in the past.  He said he was thinking about giving up pills for Lent.  Ha!  We’ll see about the ice cream…

Day 267 – Thick Skin, Thin Skin

Jeff received high doses of Methotrexate as part of his treatment in the hospital last May and June.  This week’s news reports that there is a shortage of Methotrexate, used for treatment of pediatric leukemia, hit me like a brick.  I have strange, mixed feelings about the news.  Can I describe it as stingy? grateful that Jeff got what he needed? empathy for the kids who are waiting for their supplies? pity for their parents?  anger at the the drug companies who should have foreseen the problem?  It turns my stomach to think about it.  I wonder whether there is a suitable substitute for adult patients and whether Jeff’s transplant would have been possible without it. 

Jeff has still not made an appointment with the podiatrist because he is not looking forward to treatment for his ingrown toenail.  He is afraid the podiatrist will remove the young, thin toenail and he’ll have to start growing yet another one.  Some days it oozes so he really cannot put it off much longer.

His fingernails, too, are still paper-thin.  He isn’t wearing Band Aids to protect them as often as he had been but the nails still tend to fold over and split.  He keeps nail files around the house for his constant “preening.”  Despite his weak nails, he rubs my back on occasion.  One night he scratched my back, truly believing he was doing a nice thing for me.  I appreciated his thoughtfulness and did not want to tell him how much his sharp nails hurt.  I foolishly kept my mouth shut.  The next day he saw my back and said, “It looks like you’ve been whipped.  Is that from me?!” 

I related this story to Kerry, Keith and Theresa when they were here for dinner.  I told them how easily Jeff can cut his face, sometimes just with a simple gesture of running his hand along his forehead.  I told them that, when they were newborn, we used to put socks on their little hands to prevent their tiny fingernails from scratching their faces.  Keith asked, “Are you suggesting we put socks on Dad’s hands?”  Honestly, it had crossed my mind. 

While crawling around on the floor doing some repair job or another, Jeff rubbed the skin off his elbows.  He wasn’t even aware he had done this until he showered that night.  He said he thinks his skin is thin and more susceptible than usual to a little brush burn.  And so, here is another way Jeff and I are (or have?) Yin and Yang: thin skin and thick skin.

Day 259 – Mr. Cranky Pants

Since starting on steroids in December, Jeff has been waking up at 12:30 a.m., 2 a.m., or 4 a.m. jazzed and ready to start his day.  He usually resists getting up and listens to an audio book on his iPad instead.  I, on the other hand, have been sleeping really, really well.  In fact, I would say for a woman at my stage of life, I get excellent nights of sleep.  This week, however, we both suffered from a little insomnia.  It was probably oncologist-appointment anxiety.  Neither of us worries overly much about Jeff’s condition right now and we do love Dr. Porter, Dr. Rager and the staff at the Perelman Center.  Even so, anticipating a doctor visit is stress-producing.

We had a lot to report to Dr. Rager and Dr. Porter.  Jeff has had nose bleeds, continued problems with his fingernails, an infected toe, a broken tooth, pain under his left arm, grouchiness, a changing mark on his back, profuse sweating, swelling at the ankles and a very puffy face.  It wasn’t necessary to report this last symptom because Dr. Porter noted the pudgy face as soon as he walked into the exam room.  We forgot to mention his hand cramps but we already know that it, as well as most of the things on our list, is a side effect of the steroids.

Among Jeff’s pre-transplant doctor visits was one with a dermatologist at the Perelman Center.  She had suggested Jeff visit her again at some point after transplant.  We asked Dr. Porter if it was time for Jeff to see the dermatologist again.  He agreed it was.  He also said it was safe for Jeff to see a podiatrist about his infected toe.  The toe that lost its nail a few months ago is trying to grow back but it is ingrown, bloody and sore.

These are minor issues, though.  Dr. Porter said Jeff is “doing great.”  He said, “I know it feels like you have been doing this forever but it is early yet.”  He was referring to the year-long recovery.  There are still 106 days to go.  The goal now, Dr. Porter said, is to get Jeff down to 20 mg of Prednisone in the next three weeks, check his liver function again, and then, if all is well, taper to 20 mg every other day.  We left the office before Jeff’s labs were back but with instructions for the next phase of the taper.

Dr. Porter always asks what Jeff does to build his strength.  He does his PT exercises and keeps himself busy.  Recent projects include running new telephone wires at my parents’ house and helping our neighbor get his brother’s house ready for sale which involved some light carpentry and digging a drainage hole in the yard.  At our house he has been cleaning and doing some awesome cooking – best lasagna ever!  He seldom naps anymore.

The steroids cause crankiness.  We were warned.  Jeff has had a few quick flare-ups, most recently on Sunday while we were getting ready to leave the house for church.  It involved a donut and an agitated insomniac and, well, someone got her feelings hurt.  If you want the full story ask me.  You could ask Jeff but I’m pretty sure Mr. Cranky Pants’ version would be different than mine.

You may have seen the news reports this week from Rider University.  A norovirus outbreak sickened many students.  Some of Keith’s friends were sick but he seems to have escaped this one so far.  Evidently, some staff members were affected but no one in my office, thankfully.  We don’t want to bring that home!

Jeff and I shared pizza for dinner tonight.  We ordered plenty, expecting to have leftovers.  However, Jeff’s incredible steroid-induced appetite kicked in and he ate 11 slices of thin-crust pizza.  He was seated in the restaurant with a good view of the dessert case and could not resist having chocolate cake for dessert!  Amazing!

Over dinner, we discussed how it feels to get good reports from the doctor.  We are starting to allow ourselves to believe that Jeff will be well for a long, long time.  The risk of GVHD continues as does the potential for problems associated with the harsh pre-transplant conditioning.  And, of course, there is the disease itself.  It is difficult to put those fears away completely.  We both feel that Jeff is cured but you just never know…

This morning when our train arrived in University City, a man and woman were asking how to get to the Perelman Center.  I answered gleefully, “We’re going there.  We’ll show you the way.”  The woman said, “But you’re walking, aren’t you?”  I saw then that she wasn’t going to be able to walk the block to the front door.  She was too sick.  How awful that she would have to wait for a taxi.  As we began walking, Jeff saw a taxi and tried to flag it down for them but it didn’t stop.  We wondered how annoyed a taxi driver might get with such a short fare.  I wonder whether there is a better solution available.  We thought it might be possible to bring a wheelchair from the lobby of the Perelman Center.  Prayers, please, for the woman we could not help.     

Day 249 – More Bucket List Fun and Tooth Troubles

We took care of another item on the Bucket List - a long weekend trip by train to Boston.  We walked miles each day because the weather and our energy held and because Jeff preferred traveling on foot rather than the subway.  We also used a sightseeing trolley bus to get around town but, of course, it only made a loop in one direction. 

Jeff's appetite impressed me, even considering the steroid factor.  Waiters offered advice on what the hungry man ought to order and he was never disappointed.  Our favorite meal was at a small Italian restaurant called Euno in Boston's North End.  Dino took good care of us there.  We shared an antipasto, quite a lot of food - cheeses, prosciutto, olives, arugula - and then Jeff ate a 24-ounce rib eye steak!  I had zuppe di pesce which Jeff finished for me, just like he always used to do.

While we were enjoying our meal, we heard Dino tell the diners at the next table to return on February 27th for their Leukemia and Lymphoma Society fundraiser; fifty percent of the proceeds would be donated.  Later, when Dino stopped at our table, I thanked him for supporting the L&LS and told him that the healthy appetite Jeff was busy demonstrating was newly re-acquired.  Dino was so happy to hear Jeff's story that he offered me another glass of wine, on the house.  I declined with the confession, "I'm a cheap date."  When we ordered dessert, though, Dino decided that would be on the house because Jeff was "doing so well."  We then shared Tiramasu, probably the best we'd ever had.  It was at least as good as Theresa's!  Jeff still had his reading glasses on the table when we finished our meal.  He put the glasses on and pretended to search his plate and the table around it for any crumbs he may have missed!  No chance!

Of all the restaurants in Boston, we managed to go to two of them twice.  One was the McDonald's near our hotel where we had breakfast twice.  We rarely go to McD's when we are at home - imagine that! - and Jeff was eager to have Egg McMuffins, plural; he ate 3.5 of them this morning!  We also had lunch twice at a German restaurant near our hotel, Jacob Wirth's, the second oldest restaurant in Boston.  

The only complaint we can make about the hotel was that they offered free, warm chocolate chip cookies.  Oh, boy.  Jeff enjoyed one of these big beauties every night, even if we had just had dessert with dinner!  I would have preferred free Internet but I have to say the cookies were very nice.

Other highlights of our trip included seeing the Blue Man Group (a feel-good, high energy show), visiting the Isabella Stewart Gardner Museum (Kim's recommendation), lunch at Cheers (it sounds tourist-y but the food was actually good), walking and touring parts of the historic Freedom Trail, and visiting the Museum of Fine Arts from opening to close and still missing lots and lots of it.  We were on the move as much as we ever were on vacation and we enjoyed our hikes around town - plenty of conversation and a good deal of laughter.

On all of our family vacations in the past (usually car trips), I was the map-reader/navigator while Jeff's magnetic nose oriented us to the direction we intended to travel.  We made a good pair.  Interestingly, we noticed on this trip that he no longer seems to possess that magnetic nose.  Trains seemed to him to approach from the wrong direction, causing him concern over whether we were headed in the intended direction.  Unfortunately, he also did not seem to be able to consistently follow our routes on the map which kept him disoriented and distrustful of my navigation.  Poor guy!

At our last Gilda's Club meeting, we told the group we were planning these two Bucket List adventures, ice-skating in NYC and a weekend trip to Boston.  Connie asked Jeff if he worried about getting sick while we were away.  Evidently, that had once happened to her; her husband nodded vigorously as they remembered that terrible trip.  Jeff hadn't thought much about that possibility but admitted to me later that he worried that I would get sick and we wouldn't have a car.  For some reason, the idea that we couldn't drive home on our own schedule bothered him.

Jeff didn't get sick but he did lose part of a tooth.  Other cancer patients have told Jeff that chemo wrecked their teeth and he was naturally hoping to avoid that problem.  Our new friend, Jeff R., did not typically have trouble with his teeth yet after his stem cell transplant - and something like 30 chemo treatments - he had five cavities!  The broken tooth did not seem to bother Jeff much.  He will be off to the dentist in the next day or two, though.

Jeff thanked me a few times for making the arrangements for this trip.  He is such a sweetheart!

Day 241 – Check One Off the Bucket List

 Yesterday Jeff and I attacked the ol’ bucket list with a trip to NYC to ice-skate at Rockefeller Center.  Jeff charged from Penn Station to Rockefeller Center so determinedly that I had trouble keeping up with him at times.  He was anxious to get on the ice and worried that it would be too crowded or that something would prevent our being able to skate.

The city streets were busy but not as crowded with people as they have been every other time we have been in New York.  We were kinda liking the ease of getting around town in this post-Christmas, pre-spring interval.  It had snowed an inch or two on Saturday; maybe the weather kept people home, too.

There was only a short line at the rink’s sales desk and in no time we were squished onto a bench in a 10’x12’ room, lacing up blue plastic resin skates with maybe 30 other people.  The ice, though, did not seem too crowded.  The pace was a lot slower than at rinks at home.  It is a small rink, I think, and the ice was rough with overuse.  Still, it was glorious to be there. 

Ice-skating uses different muscles than you might use every day and Jeff had a lot of difficulty getting going.  I think that his de-conditioning sometimes sneaks up on him and frustrates him.  He complained that the rivets in the sole of the skates felt like nails.  I suggested trying a different pair but he didn’t think it would make any difference in his ability to skate.  He told me to, “Go skate,” while he shuffled around the rink.  I didn’t worry about his getting run over because there were several little kids and no one was racing.  I lapped him a few times before I rounded the circle to see him down, an attendant standing protectively behind him while he tried to get up.  Jeff told me later that the attendant had asked him if he was okay and he answered, “yeah,” but then he realized he couldn’t get up because he couldn’t get the skates under him.

Well, I worked up a sweat, anyway.  And by my mother’s standards, Jeff succeeded.  She always said, “If you don’t fall while ice skating, you’re not trying hard enough.”  Jeff tried.  We stepped off the ice feeling a little lighter - happy to have had the experience (and each of us having left an arm and a leg behind). 

Jeff regretted not kissing me on the ice – he had meant to – so he led me to the brick wall that overlooks the ice and planted one on me.  After walking by the window of the Today Show set, we headed downtown.  Jeff may not have skated well but he sure could walk!  He balked at my suggestion that we use the subway to make our way to East Village for the show Silence! The Musical.  And after the show, he insisted that we walk back to Penn Station instead of using a taxi.  The weather was fine for walking.  We walked six miles in all, with occasional breaks for nourishment and window shopping. 

At home, I asked Jeff whether we should plan a repeat trip next year.  He said he did not feel the need.  We can check that one off the bucket list.

Day 238 – Good News, More Good News and Yet More Good News

After last week’s tortuous trip to Philadelphia, I was a little concerned about Jeff making the trip alone for his labs.  It turns out yesterday was a really, really good day.  He did not collapse into bed upon returning home from Philly mid-morning.  No!  He ran errands, did chores, and helped our neighbor.   When I got home from work, Jeff gushed with the day’s accomplishments and continued to remember more of them all evening.  He did not want to sit and rest after dinner because he would fall asleep.  Instead, we did another errand together and stopped for milkshakes afterward.  His steroid-induced metabolism is incredible.  Only a short while later, he had yet another snack.  He is maintaining his svelte figure.  I don’t know how.

To make it an even happier day, we learned that the bid Kerry and Theresa put in on a house was accepted!  We had been invited to see four of the houses under consideration; it was Jeff’s expertise they were after but they were kind enough to invite me along, too.  Immediately upon hearing the news, Jeff began dreaming up ways he could help.  I am sure they will have many little jobs Jeff can do.  However, he will have to remember that there was a good reason Kerry and Theresa chose this house instead of the beautifully refurbished farmhouse:  there were no projects or improvements left to be done on the farmhouse.  Their mid-century modern house, however, does have a few projects that Kerry wants to do – I repeat, Kerry wants to do.  I am sure the young couple will appreciate Jeff’s assistance, nevertheless.

In the evening, Dr. Allison called to tell Jeff that his labs showed improvement in his liver function and that he can begin to taper the steroids again.  Whew and yippee!

One day this week, Jeff ran into an old customer while doing errands around town.  Eric mentioned that he was searching the web for ideas to incorporate architectural salvage into a bathroom renovation and he happened upon Jeff’s name.  I Googled “salvage bathroom Jeff” or some such combination and there he was, in one of the first five hits!  Photographs that were used in an article in the July 2009 issue of Old House Interiors were used in an article in the March 2011 issue of Arts & Crafts Homes: and the Revival.  It is always fun to see his work appreciated and after pinning it on Pinterest, we received a nice comment from a stranger/admirer.

Keep the prayers coming for many more such good days.