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.

Day 232 – That’s What Friends Are For

This week began with Jeff canceling Sunday plans with his brother, Paul.  He felt so lousy and he seemed worried which, of course, worried me.  Monday morning brought another stress migraine which causes his vision to blur.  When Keith and I left the house for work, I really didn’t like leaving Jeff alone.  He improved through the week, though, and, in true Jeff fashion, he pushed himself and was somewhat productive.  By the end of the week we decided to risk non-cancellable reservations for a long weekend, bucket-list trip to Boston later this month.

Jeff did a couple of small repairs for friends this week and got sore from his efforts.  He said it was “a good sore.”  When he went to PT, Mike was shocked when Jeff told him that he worked this week.  I keep telling Jeff to be careful what he calls “work” because the phone will be ringing off the hook if people think he’s back in business.  Mike noticed that Jeff’s scapula was popping out easily again.  He didn’t say it wasn’t a good idea for Jeff to work but he spent a lot of time on exercises to keep the scapula in place.  As usual, Jeff did his exercises a few times at home but not as regularly as he should. 

Last night we had wonderful dinner company.  Jeff’s hospital-hall-walking-buddy, Jeff R., and his wife, Marie, drove in awful, Friday-night traffic from Conshohocken to go out to dinner with us.  As soon as they stepped into our house there was a lot of laughter because we realized that the two men had never seen each other with hair!  Marie loved seeing the furniture that Jeff made and was tickled when he presented her with a caregiver spoon that he turned for her.  After a quick tour of the woodshop, a must-see for Jeff R., it was time to head out to the restaurant.

Over dinner, we got to know this resilient man a little better.  We learned that Jeff and Marie used to live in Queen Village (across from Old Swede’s Church, near where Kim lives now), we heard a little about their family and the tale of their quasi-spontaneous wedding on Monhegan Island off the coast of Maine, a favorite vacation spot.  Jeff R. is an upbeat, charming gentleman with an easy laugh and an Arkansas drawl.  A lot of our conversation was not about cancer.  However, it was that shared experience that brought us together so, of course, we talked about that, too. 

We knew a little of what Jeff R. had been through from our conversations with him at the hospital and in the waiting room at the Perelman Center.  He is a testament to what the human body and spirit can endure.  He was hospitalized for seven months when he had a liver transplant and, thankfully, does not remember parts of that stay.  He was completely de-conditioned afterwards.  He has had something like 30 chemo treatments and a few hospitalizations, including one for a stem cell transplant (his own cells).  He talks about keeping a positive attitude but somehow that doesn’t seem at all difficult for him.  I suspect that, like my Jeff, he has always been a strong, happy man.

How fun to discover that Jeff and Marie also know The Irish Dude, Daniel!  Marie said she was knitting in the waiting room at the Perelman Center when Daniel came and sat next to her.  Evidently, he knits, too!  Jeff and Marie would also like to re-connect with Daniel.  Hopefully, Nurse Jackie at Dr. Porter’s office will give Daniel our number and we’ll hear from him. 

I cannot describe the anticipation Jeff and I have for our Boston trip.  I don’t know whether it is the normalcy of taking a weekend trip or the relief that it is even possible.  Oh, I just can’t seem to say what I mean…  Jeff and Marie have not taken a vacation in the six years that he has been dealing with his cancers.  Jeff R. laughed as he began to describe Marie’s phone call to Monhegan Island, requesting the same place they stayed the year they were married.  I said, “Marie, did you play the cancer card?”  With a chuckle she admitted, “I did.”

We enjoyed ourselves immensely and, as Jeff and Marie were leaving, there was a lot of talk about “next time.”  My Jeff said, “Isn’t it nice to be able to make plans?”  Marie’s Jeff replied, “It really is.”

This morning, Jeff’s phone chirped to announce a text message from Dan.  Jeff thought Dan probably wanted to go out for breakfast and he groaned, thinking of the nice, large meal we’d had out last night.  I assured him he wouldn’t have to order a three-egg omelet; he could order toast and coffee.   Jeff exclaimed, “Oh, I wouldn’t do that!” 

He fumbled the phone while trying to send a text message and I asked if he wanted me to send a message for him.  “Yes.”  He then dictated an invitation for breakfast.  I asked Jeff whether he would like to invite Jennifer, too, because I knew I’d like to go out for breakfast.  He said firmly, “No.”  Many a Saturday morning finds Dan and Jeff in search of another stainless steel diner to tick off their list.  Just once, I thought, the ladies might be invited, too. 

Then Dan’s message came back, “Does Amy want to come, too?”  I laughed as I read out Dan’s reply. 

I sent back, “Dan, this is Amy.  I wanted Jeff to invite Jennifer, too, but he said no, it’s a guy thing.  I believe it is 3 to 1, though.  We win!” 

The reply from Dan’s phone said, “Amy, this is Jennifer.  If Jeff needs guy-time, we can go separately.” 

My final reply, “Jeff concedes.  Let’s meet at 8:30.”  We met at a local restaurant so no stainless steel this time, just our golden friendship. 

We do cherish our friendships!  New ones and old ones! 

Day 224 – Roller Coaster

Jeff celebrated his “old birthday” this week, a birthday which he shares with my mother.  He shares his “new birthday” with our daughter.  Although Nurse Heather had told him not to eat sugar, I did make a nice chocolate cake which we shared with Kerry, Theresa and Keith.  I froze a couple of pieces for Jeff to enjoy later, if his glucose is good. 

We went out to dinner twice this week, once with Kerry and Theresa and last night with our friends Annie and Pete.  At the end of each evening, Jeff asked me how dinner was.  He wasn’t asking in the usual way, “Did you enjoy your meal?”  Instead, he wanted to know whether he should have enjoyed his meal.  His taste buds are not working very well.

We all have probably heard the cancer journey as being an “emotional roller coaster” and today provided some ups and downs.  This morning, enroute to the Perelman Center by train, Jeff was as near to depressed as I have ever seen him.  He has not been feeling well, has very little energy and frequently has a weak voice, too.  After we rushed to cross the street between the train station and the Perelman Center, he admitted that he almost didn’t make it across the street because his legs felt like lead.  He was so forlorn by the time we got in the building that he had difficulty deciding whether we should have our customary drink at Gia Pronto before heading upstairs to Dr. Porter’s office.  He said coffee has been upsetting his stomach.  I suggested tea.   He did not enjoy it. 

While sitting in the waiting room at Dr. Porter’s office, Jeff looked up and saw Daniel, the Irish Dude from his days of Vidazza treatments at Aria!  Jeff jumped up to greet Daniel and learned that Daniel had a bone marrow transplant exactly one month before Jeff’s.  Daniel had been hospitalized for Graft vs. Host Disease twice since his transplant; his intestines are being attacked.  It is very common for BMT patients to end up back in the hospital at some point and Daniel’s experience punctuated our fears that Jeff’s GVHD is not being managed well.

Jeff was called back to the lab for the usual blood tests.  And once again they swabbed his cheek for the Engraftment Analysis!  Jeff guessed it was the fifth time they collected his DNA and still we had never gotten the results!  The test compares the DNA from his mouth to the DNA in his blood which, hopefully, is 100% donor DNA.

It wasn’t long before Jeff was called to an exam room.  Dr. Allison said she would check Jeff’s labs for his electrolyte levels.  They might be low following the stomach virus we had last week, one possible explanation for his low energy level.  Allison said Dr. Porter had gotten the dreaded stomach virus, too, and many of their patients were reporting vomiting (as we had) as well as diarrhea (which we, thankfully, did not have). 

Allison said Jeff’s blood counts were all good, even his hemoglobin was normal at 14.5!  She said his numbers were all “in the red” which evidently has a different meaning in hematology than in the business world.  She called the lab to inquire about Jeff’s Engraftment Analysis and found out that his September test had been completed at some point and that it showed his blood was 100% his donor’s DNA!  That is excellent news!  Now we need to make sure that the December result is the same.  That result is not yet available.

Dr. Allison went to discuss Jeff’s issues with Dr. Porter and then they both returned to the exam room.  We had reported Jeff’s leg cramps, locking finger joints, blurry vision and exhaustion paired with infuriating insomnia.  Dr. Porter said all of those symptoms are side effects of the steroids.  He noted Jeff’s puffy face and Jeff conceded that I often tell him his face is puffy but he didn’t believe me.  There were three people besides us in the room, all of whom nodded, “Yes, you have a puffy steroid face.”  Dr. Porter said this, and the other annoying side effects, may get worse before they get better, even though we are tapering the steroid.  He said, “This is the hard part.”

In the presence of his doctors, I asked Jeff whether he felt better, knowing his symptoms are attributable to the steroids.  He has been so distressed lately and I wanted to make sure we alleviated his concerns.  He said, “Well, I still feel crappy.”  I wasn’t sure we properly conveyed how Jeff’s activity level has decreased so I gave the example of Jeff’s reporting “lead legs” while running to cross the street.  Dr. Porter said, “Oh, yes!  That’s called muscular myopathy.  It affects the large muscles responsible for lifting and balance.”  That made sense.  We related how Jeff walked two miles to the grocery store but when we got home he had difficulty lifting his legs to go up three steps into the house.  Now I felt better; they really understood Jeff’s condition.  Still, I had a niggling feeling that the instructions they gave us would be changed later today when the rest of Jeff’s labs were run.

As we left the office, Jeff was moving a little slowly and looked wiped out.  He said he felt lousy.  However, he would not think of leaving the city without seeing Kim (how dare I suggest it?) so we met her near her work for lunch.  She’d been traveling on business earlier this week and it was fun to hear all about her trip.  Jeff was quiet but he did eat. 

The train ride home was difficult for him.  As soon as we were home, he crashed into bed and slept.  The phone rang and when I saw it was the University of Pennsylvania calling, I knew there was, in fact, still an issue with his liver.  It was Allison, reporting that his liver is “okay but not fabulous.”  I recognized the phrase as Dr. Porter’s; the senior doc must have advised the young ‘un how to relay the news.  She told me that his ALT, one of the liver measurements they routinely run for Jeff, should be in the 15-60 range.  When his GVHD was diagnosed, it was 349.  After one week of steroids it was 92. It is now back up to 140.  Instead of returning to the office in six weeks as they had previously requested, they want to repeat the labs in two weeks and see him in four weeks.  We are to keep the next dosage of steroid steady until they see him.

Down, up, down, up, down!  What a ride.

Day 219 – Dueling Basins

As the holiday break approached, Jeff kept asking me if there were any day trips I wanted to do.  Really, I just wanted to lounge at home but since Jeff has probably had enough of that, I was a good sport and agreed to two day trips: taking my mother to see her sister in York County on Thursday and a trip to the Woodmere Art Museum with lunch and shopping in Chestnut Hill on Friday.  I told Jeff that I would still have the long New Year’s weekend for some “layin’ around.”  Be careful what you wish for.

Thursday’s visit with Aunt Joan, Uncle Oscar and family was very nice.  The trip was Jeff’s idea and so he insisted on driving both ways.  This was the first time since BMT that he drove a long distance and he seemed sort of proud of himself.  Mother was relaxed and did not seem to be worried about leaving my father for the day, even when we began to see snowflakes out of Aunt Joan’s picture window.  During the last year, my mother and I have shared our feelings and concerns about being caregivers.  I think we have held each other up a lot and I was pretty sure it would be a challenge for Mother to enjoy the day and not worry.  The drive out is a little more than two hours, lunch and visiting, the return trip…  in all, we were away for eight hours.  It was good to see my aunt and uncle, my cousin Carol and her husband Dave, their daughter and two fun grandchildren.  Back at the “ranch,” Linda took care of Pop in the morning as usual and Keith stayed with Pop the whole day.  Almost as soon as we got back home to Pop, he told us, “The day went really fast!”  What a relief!  His comment revealed that he was concerned about being without Mother for the entire day.  He was a trooper and seemed to have made the best of it.

On Friday, Jeff and I spent a lovely day touring the Woodmere followed by lunch at a Japanese restaurant that I had once been to with Kim.  It appeared as if lunch was going to be difficult for Jeff because his hand tremors have been giving him a little trouble.  Osaka is one of those restaurants that provide only chopsticks and you don’t want to embarrass yourself by asking for silverware.  Except for flipping a chopstick into his lap once, he did very well, enjoying a bento box lunch with six compartments for six menu items.  He shoveled his food like a hungry teenager or a BMT patient in an urgent, steroid-induced hunger.  He asked me whether he should eat the salad and I nodded, not realizing he was asking whether it was safe for him to eat the salad.  He isn’t supposed to eat raw vegetables at restaurants except when he can guarantee the veggies are washed really, really well.  When he lifted the top layer of the box and revealed the three bottom compartments, I saw that one of them held three pieces of sushi.  I said, “Now THAT, you should not eat!”  He pouted and asked, “Why not?”  I shrugged.  It is all about risk management and I don’t like to be the one to tell him what he should sacrifice.  Ultimately, it is up to him. 

Unfortunately, by 5 p.m. we both had re-runs of our lunches.  If my mother and Keith hadn’t also gotten sick within 24 hours, we might have thought it was food poisoning.  We took turns vomiting all evening.  I wasn’t sure if I should do anything special for Jeff – like call his oncologist.  I did take care to wipe the sink, toilet and vomit basins after each time either of us threw up.  I changed my clothes frequently to minimize carrying germs back to bed with me.  Who knows whether it made any difference since we were already both sick.  Keith was out with friends but by 9:30 p.m., I texted him to ask for his help.  Soon after he arrived home, his parents were simultaneously vomiting.  Poor guy!  He used his dad’s gloves and face masks, hand sanitizer and a trash can with a foot pedal and helped us keep everything as clean as is possible in these situations. 

By Saturday morning, Jeff was able to do our gross laundry and changed bedding.  For some reason, Jeff recovered quicker than I did.  Maybe it is because he has been taking anti-viral medications for seven months while he builds a new immune system.  Pre-BMT, Jeff rarely got sick and when he did, he would have a mini-version of whatever the rest of us got.  A 24-hour bug for everyone else was an 8-hour bug for Jeff.  So this quick recovery was familiar and a little irritating. 

My fever broke the evening of New Year’s Eve.  We hadn’t made any plans this year so there was no party to be disappointed about missing.  However, we had to tell Kerry, Theresa and Kim not to come for New Year’s Day dinner.  Bummer!

For all of his precautions, Keith began throwing up early Sunday morning.  I was not sure yet whether I was well enough, so Jeff tended to Keith.  One of the times he was up with Keith, Jeff put the dog out.  As if things weren’t disgusting enough, when he opened the back door to let her in, Giblet sat resolutely on the porch with the tell-tale sheepish look that says, “I am not fit to enter the house.  I have eaten something which needs help leaving my body.  I do most humbly apologize.  Please help me.”  Jeff left her there on the back porch, embarrassed and disgraced, while he fetched a rag to perform the necessary assistance.

I confessed to Jeff that I really, really did not like being sick for a couple of short days - oh, the guilt that confession produces!  Jeff has been sick or recovering for sooo very long and never, ever complains.  He is such a good egg!

And so, all around, I cannot help wishing for good health in 2012!