Grange Fair, Three Green Frogs and a Clown

We made up for Jeff’s having missed the 2011 Grange Fair by going not once, not twice but three times this year!  That is, three fair days plus the trip up to enter a spoon in the wood-turning category.  He earned a red ribbon and a $5 prize!  We collected his spoon and prize money tonight and walked the fairgrounds one last time.  Some of the animals had already been taken away and most of the vendors were clearing out.  Exhibitors carried away their photography, Lego projects, vegetables and jellies, along with their ribbons.  Some were first-time exhibitors, proud of their beginner’s luck.  Others were veterans repeating the familiar routine, also proudly.  I have been at the fair at clean-up time before and always felt it was a sad time.  Tonight, though, Jeff and I chatted and strolled, enjoying the activity. 

We see family as well as old friends at the Grange Fair each year.  On each of this week’s visits to the fair, we stopped in the pig barn to see whether Sarah G. had entered a pig (she had – and a young dairy steer, too) and to take a chance that we would run into her mother, Debbie, a customer of Jeff's.  We hadn’t seen them yet but tonight we walked past the judging pavilion and Jeff thought he saw Debbie sitting in the nearly empty stands.  There were some young people in the ring and a judge was commenting on their entries but we couldn’t see what they were exhibiting; they held their entries close to their bellies.  In the center of the ring was a heap of soiled wood shavings.  Evidently, they had already begun the clean-up in here, even though it appeared the judging wasn’t finished.  I finally got a glimpse of something with construction paper ears and realized they were showing their pet rocks!  How silly and fun!  Debbie saw Jeff as we slipped into the stands.  She gave him a big hug and a kiss and was genuinely pleased to see him.  Debbie chatted while she snapped pictures of the kids in the ring.

The judge was an excellent commentator, perfect for the mock occasion.  He reminded me of my father who always found nice things to say when judging guinea pigs and rabbits, even when the animals were obviously pets and not necessarily show-quality.  He would praise the child’s good care of the animal and the animal’s nice ears, whatever.  The kids in the pet rock contest were doing it all in jest.  One girl wore her mucking boots. All the exhibitors posed as if they were showing their sheep or cattle.  It was very funny!  Debbie explained that the young people organize these silly contests for the last day of the fair.  Last year there was a goldfish contest.  Cute!

After the awards were given, Jeff showed Debbie his award-winning spoon.  He told her, “This is what I am reduced to.”  She admired the spoon’s nice grip and I wondered why Jeff didn’t offer it to her.  He told me later that he was thinking about it but wanted to put one in a gift bag for her.  Debbie told us that she reads the blog and that Jeff inspired her to click on the Be The Match link and register her marrow for donation.  I was touched by her generosity and puddled up a bit at the thought of it.

Kim came up from Philly for the Grange Fair on Thursday night and spent the night with us.  In the morning, I took her out back to show her Jeremiah, a large Green Frog who has taken up residence in our yard, and a younger frog, as yet unnamed.  She crept toward the “pond” (our 3-foot-in-diameter water feature).  As she approached, the young frog jumped into the water.  I said, “Oh, too bad!  You missed the small one.  Did you see it jump in?” 

Kim said, “It’s right here.”  I looked where Kim was pointing.  Sure enough, there was a frog that was much smaller than the familiar “small one.”  So now there are three!  They tend to sit on the rocks surrounding the water feature in about the same spots.  Those positions helped us to name the younger ones, Noon and 3-o’clock. 

Jeff and I check with each other daily as to whether there have been frog sightings, “I haven’t seen 3-o’clock today, have you?”  They remain very still in the grass, even when I mow, so that it is nerve-wracking to mow around the water.  I am on high alert, heart racing as I circle the pond with the noisy machine.  We are becoming attached to our green friends and have begun reading how they winter-over and wondering whether they’ll still be here next spring when, our Master Gardner friend Annie tells us, they will make a twanging sound.

We spent a lovely Saturday evening with friends Ken and Kathy who shared good food, great wine from their Sonoma vacation (winery tours set up by their son, a sommelier!), and, best of all, great company.  We talked about the joys of empty-nesting.  We shared grief over the loss of our parents.  We talked about our children and extended families and friends and politics (tread lightly!) and furniture and… our souls nourished, we headed home late (well, old-fogey “late”) and collapsed into bed. 

Jeff helped Kerry patch his roof this weekend.  He came home this afternoon, sat on the sofa and admitted that the 15-minute ride home was difficult because he was so tired.  Within minutes he was sleeping sitting up, still dirty from his labors.  Eventually, he got up and showered and was somewhat rejuvenated.  He offered to take me out for a birthday dinner at a vegetarian restaurant that I like and that he tolerates.  I appreciated his offer and asked for a rain check.  He tried to tell me that it was a one-time offer!  We’ll see about that!

The dermatologist had called Friday and asked Jeff a lot of questions about the change in his face rash.  For example, she asked, “Did you have a lot of acne as a teenager?”  He said, “Not like this!”  She told him to come and see her on Thursday at the Perelman Center and she prescribed a “cleanser.”  I picked up the prescription, Sulfacetamide Sodium & Sulfur Lotion, and read the instructions.  I told Jeff it sounded “a little fussy.”  He was not thrilled, threatened not to bother with it and scoffed at the price, a $30 co-pay for a non-generic Rx.  Finally, tonight I convinced him he should apply the stuff.  The instructions said to wet his face, avoid mucous membranes when applying the lotion and let dry for 10 minutes.  It went on like sunscreen, leaving a little white lotion here and there.  I set a timer for 10 minutes at which point he was supposed to rinse it off.   Meanwhile, I went outside to do a little weeding. 

I had been in the flower bed out front for a few minutes when I heard Jeff come out.  I looked up because I thought I heard him speaking to a neighbor.  There was Jeff, walking to the curb with the recyclable bin in hand and totally unaware that his face had transformed to a perfectly white clown face.  This is a guy who doesn’t like to go to the grocery store with his work clothes on.  I was pretty sure he wouldn’t like the neighbors seeing him with what looked like a mask peel on!  I sent him inside to rinse, “The timer has probably already gone off!”  Surprisingly, he didn’t seem embarrassed at all, even after he looked in the mirror.  He also did not laugh as I did.  I checked the drug packaging for the most-likely-to-turn-Jeff-white ingredient.  I think it is “wax emollient.”  I hope the stuff works well.

We had a letter from Keith with news that he may return to training soon.  Thank goodness!  He told us that he bought 100 envelopes and the humidity sealed them all!  It was really, really good to hear from him. 

Jeff began the lowest dose of Prednisone on Sunday.  Please pray for success with the steroid taper.

Stitches and Skin

Jeff cut his hand today while building a closet for our friends Danny and Jennifer.  Jennifer drove Jeff to the hospital where he got three stitches between the knuckles of his forefinger and middle finger on his right hand (his dominant hand). The doctor said the cut is in such an awkward spot that neither glue nor stitches would stay very well but stitches seemed to be the better solution.  Jennifer had a busy day planned but she spent a couple of hours in the ER with Jeff.

Jeff called me at work to tell me about his injury, describe the bandage and splint and added that he planned to take the splint off tomorrow so he can continue to work on the closet.  I asked him whether the doctor said he was supposed to leave the splint on until the stitches come out in a week or until it heals.  “Ach!” he said.  I reminded him how long it took for his scraped shin to heal - weeks!  And the shin doesn’t move all that much.  Isn’t it possible his hand would heal even more slowly?

It seems to be taking a looooong time for this closet to be built.  Danny and Jennifer have been very patient.  The closet is on the second floor and requires many trips up and down the stairs.  Jeff tires by early afternoon, especially since he is still recovering from the cold he caught two weeks ago. 

We emailed Dr. Porter to let him and the dermatologist know that Jeff’s face rash is now tender and some of the pustules are filling with pus.  He has some in his ears.  Jeff was reluctant to report this change to his doctors because he figures it will mean another trip to Penn.  Nevertheless, it was the right thing to do.

On Friday we went to Longwood Gardens to hear Jeff’s brother and sister-in-law, Greg and Palmer, perform.  They were playing for Contra dancers and sang some duets between numbers.  We stayed to see the fountain and light show afterward and were able to enjoy the light installations of British artist Bruce Munro in the dark.

Between that little adventure, my niece Sarah’s graduation party and various other goings on, Jeff hadn’t been able to get a nap in three days.  By Sunday morning we were both exhausted.  We skipped church and stayed in bed until 10:30 a.m. watching nostalgia TV.  We reluctantly rolled out of bed and went out for brunch.  Then Jeff announced it was naptime!  We had a nice, relaxing day.  Life in the slow lane…   

Old House Fame, Deep Sea Adventures, and the Magic Purse

This week the October issue of Old House Interiors hit the newsstand with the article about Jeff’s kitchen job in Aurora, NY.  The author and homeowner, Catherine, had shared the unedited version of the article with us months ago.  Naturally, it was much longer and told a lovely story about the collaboration between homeowner and carpenter.  Some of that remains in the edited version.  My favorite line is “Jeff is a talented designer.” J  Of course we know he is talented, but it was nice to see it in print.  Here is a link to the online version of the article which, unfortunately, has fewer pictures than the newsstand version:
Old House Interiors

Jeff had asked Dr. Porter months ago whether he would be able to go deep sea fishing with the guys from church.  Dr. Porter said to cover up and he’d be fine.  So as the day approached, there was much anticipation.

Five days before Fishing Day, Jeff was down with a cold and low-grade fever.  It started with a loss of appetite which is highly unusual for Jeff so I knew something was going on.  His energy level had been low and I thought he might have been sad about that.  For two days he slept a lot and ate very little.  Fishing Day was coming and it wasn’t looking very good for Jeff! 

The day before the trip, Jeff insisted that he could go.  I gently asked, “Are you sure?  You can’t change your mind when you’re out at sea.  And it could be pretty miserable if you can’t sprawl out to rest.”  He insisted, “I’ll be alright.” 

On Fishing Day at o’dark thirty, Jeff crept out of bed, quietly dressed and left the house for his adventure.  I had my reservations.  I got up at a decent hour and wrote Keith a letter, “Dad will either have a great time or be glad he tried it.”  It was a long day and I cleaned the house and took my mother out to lunch while Jeff was gone.  By the end of the day, Giblet was parked with her nose toward the door looking as anxious as I was feeling.

Jeff returned late in the day.  He looked like he’d spent the day outside, despite wearing his UV clothes and floppy hat all day.  The rash on his face actually looked better.  And he didn’t head off to bed right away as I thought he might.  He told me he caught two fish but when I looked in his hands, at the cooler, I didn’t see any signs of these fish.  Jeff said, “John took them home.  We’re invited to a fish fry tomorrow at his house.”  I briefly thought this might be a fish story like when my father brought a deer home from a hunting trip and it was really his buddy who killed it.

“So,” I said, “if I want to eat the fish you caught, we have to go to John’s tomorrow and the only way we can have it prepared is fried?”  Yep. 

Jeff said he had a standing spot on the fishing boat but couldn’t stand that long.  He sat on his cooler.  After relating who caught how many fish and how busy the mates were untangling lines, Jeff showered and put shorts on.  I noticed his ankle was swollen, probably from sitting funny on the cooler.  He seemed to have had a good time, though.  I asked, “So you’re glad you went?”  He said, “Well… I wouldn’t go again next weekend if anyone asked me to.” 

“What about next year?” I asked.  He thinks maybe…

We did go to John’s and it was fun although I only ate a couple of bits of fried fish and Jeff’s appetite still wasn’t back to normal.

Now the story of the magic purse:  I went to the post office this morning to buy stamps for my letter-writing to Keith at Marine boot camp.  I put a letter to Keith on the counter and asked for stamps.  The burly clerk shouted, “Elena!”  Then he muttered to me, “I hope she sees you before you go.”  I thought how truly thoughtful some people are when they learn you have a son in the Marines.  Was he was calling “Elena” because he noticed the Parris Island address on my letter and “Elena” is one of those people who like to express their appreciation for those in the military?  This has happened a few times so maybe it was happening again.  When my transaction was almost finished the big man said, “I was hoping she could come out.  She would love your purse.”

Thirty years ago I purchased an awesome purse in the bargain basement of Bamberger’s for $3, I think.  That was a bargain, even then.  It was sort of like a basket. I lined it with colorful scarves and enjoyed for many years until a couple of the stick pieces broke.  Evidently, I showed the broken purse to Kim many times over the years and related my ideas of ways to repair it. 

A few weeks ago, Kim returned from a thrift store shopping trip with a “surprise” for me.  It was The Purse!  She paid $1.50 for it and was “pretty sure” it was the one!  And it was - an unbroken, identical purse!  I was carrying it the day Jeff got his immunizations at Penn.  By the end of that day, Jeff was rolling his eyes every time someone said, “I like your purse!”  People in the elevator commented on it.  The nurse who checked Jeff’s wrist band almost screwed up his paperwork because she was so excited about the purse. When the nurse who was giving Jeff his shots began to fuss over the purse, I hid  it to prevent any mishaps until after she was finished her important job and then I told her the story.

I went to church with my mother and the lady behind me tapped me on the shoulder to say, “I love your purse.”  At stores and restaurants and at work, everyone who beholds the purse comments on its awesomeness.  One day, I was talking to Kim and told her I wasn’t even sure whether I’d ever gotten rid of the old, broken one.  Sure enough, I searched in my closet and found it.  AND I saw - and now remembered - that Jeff had devised a way to repair it but I’d put the thing away and forgot it was usable.  So I gave the original magic purse to Kim.    

We recently ran into a classmate of Jeff’s from his St. Ignatius days.  The two men chatted and Jeff told Carl, “I’m more or less retired.”  Ah, that’s good.  That says in a nutshell what Jeff and I have been discussing about how he might spend his time.  It brings to mind my Grandfather Schmidt who did retirement especially well, I think.  He puttered at hobbies, did projects for family members, kept his house in good order and occasionally took on a paying job.  He and my grandmother traveled a little, too.  “Retired” is somehow an acceptable way of viewing his current situation.  

Jeff is down to 5 mg of Prednisone.  Pray for a continued, successful taper, please.

Skin, Eyes, Lungs, Bones, Marrow and +1 Pill, -1 Pill

My sister noticed that our blog entries were more sporadic these days and she took that as a good sign.  It’s true that Jeff is doing well and there is no need for frequent updates. This was a busy month, though, so there is a good bit to report.

  

Last week Jeff went to the dermatologist at Penn.  The doctor who had been seeing Jeff evidently was a fellow; her term is up and so she is gone already.  Dr. Samini took the reins and, after examining Jeff, left the room and returned with three other doctors.  Each of them looked closely, touched his face and said, “Hmmm.”  They left the room to “discuss.”  I was not with Jeff at this visit so he took advantage of the time he was alone to text, “Getting other dr to look at my face.”  Later Jeff texted, “Not gvhd it is rosacea.”  The doctors told him that it did not present as typical GVHD or typical rosacea.  The cause is a combination of his medications and the sun.  The agreed- upon treatment is anti-bacterial gel twice a day and Jeff is to call if there is any change either way.  To me that means, “We’re not really sure, so keep us posted.”

On the return train trip Jeff texted me again, “All 4 Dr loved my hat thank your wife.”  He’d told the docs that if I loved him, I would wear a goofy hat to show support.  They insisted his hat wasn’t goofy.  He argued, “You walk down the streets of Philadelphia and nobody else is wearing a goofy hat like this!”  Poor guy.  I think it is an awesome hat because it is protecting my honey. 

The next day Jeff saw an ophthalmologist in Langhorne.  After receiving the good news that he does not have cataracts, he was turned over to the optometrist.  He doesn’t need to change his reading glasses but he needs distance glasses for the first time ever!  He only needs to wear them for driving and watching TV which became evident today when we went out.  Jeff forgot his sunglasses so he wore his new glasses with clip-on sunglasses.  That worked fine in the car but as soon as he tried to walk, he put his hands out as if to catch his balance or feel for obstacles like a blind person.  He tripped several times until he got the lay of the land – and walked more carefully.  I think it must be worse to only need glasses with slight correction because he needs three pairs of glasses, plus the clip-ons (reading glasses, distance glasses with clip-on sunglasses, and regular sunglasses).

At Penn yesterday we saw Dr. Rager first.  We reported on the dermatology and ophthalmology visits.  We also got the results of Jeff’s pulmonary function test (good) and Dexascan.  The Dexascan showed some thinning of the bone, called osteopenia, so Dr. Rager prescribed Calcium/Vitamin D.  Jeff moaned about an additional pill.  We also passed on the observation that my niece, audiologist Dr. Lauren, made - Uncle Jeff seemed to have some hearing loss since her last visit back east.  Lauren had told us that hearing loss is very common among cancer patients who have had chemo.  Dr. Rager said that Jeff didn’t need to worry about it yet, unless it was something that was bothering him.  Hmph!  I joked about people with hearing loss never thinking they have a problem.  We’ll keep watching that…

We also got the results of Jeff’s bone marrow biopsy.  Super!  His bone marrow is 99% donor marrow – that is excellent!  The biopsy report said “mildly hypocellular marrow (40%).”  When Dr. Rager saw me studying the report she said, “There is a number there that might look bad but it isn’t.”  She explained that 40% hypocellular marrow is age-appropriate and good.  The report noted “1 Blast” in his marrow.  That, too, is normal.  “We all have some,” Dr. Rager assured Jeff.  Jeff remembered when he had 18% blasts on diagnosis and 23% blasts after four months of Vidazzling.  He was relieved to hear the word “normal” in reference to his marrow. 

Dr. Rager probed a little for any complaints.  Jeff said, “Well, an infected cuticle (or “ugli-cle” or “ouch-icle”), numb feet, excessive sweating.”  She nodded and said, “I know you are doing better, though, because your complaints are fewer and less forceful.”  We agreed a lot of the side effects have diminished.  He no longer rocks when he walks because his back hasn’t bothered him in awhile.

When Dr. Porter joined us, he said, “You are in remission by every definition of the word.”  I think we need to keep hearing that because we’d been stuck on, “There is no true remission with MDS.”  I think he is referring to the AML but I don’t know how to separate the two.  With each repetition of “You are in remission,” we allow ourselves another degree of acceptance and hope, a little relief from the sense that we have to be on full-alert, watching for problems, side effects, GVHD, etc. 

Dr. Porter saw that Jeff’s face still was red and bumpy, and with a cavalier wave of his hand, told Dr. Rager, “Let’s take him off VFend.”  VFend is an anti-fungal and one of his medications that cause extreme sensitivity to the sun.  So now Jeff is up a pill, down a pill, a zero net effect!  And there is a possible benefit to his face!  That is good news to me but Jeff doesn’t care much about that.  He told me recently that his skin problems don’t bother him but the extreme sweating does bother him a lot.

I suggested that Jeff tell Dr. Porter about being on his friend’s roof this week in 3-digit temperatures.  Dr. Porter said that probably wasn’t a good idea.  I thanked him for reinforcing my opinion and, with a chuckle, told him that Jeff doesn’t always “make good choices.”  Dr. Porter said we couldn’t blame them for that and then backtracked, citing the effects of “chemo-brain.”   Maybe it is their fault! 

Jeff was surprised at how much blood they drew at this visit.  Dr. Rager explained that another chromosome study would be done.  It takes a long time so we won’t hear about that for awhile.  When we left the office we did not yet have the results of his liver function tests.  Dr. Rager did not anticipate a problem.  The steroid taper can continue!

We went across the hallway for Jeff’s immunizations:  Hib, TD, Pneumoccocal.  Jeff was told the tetanus shot would hurt and maybe cause a fever for a day or so.  It was, in fact, a little bothersome, pretty sore.  That afternoon Jeff had one of his “kaleidoscope” migraines, a stress migraine that causes “kaleidoscope” vision.  It only lasts a short time.

Jeff has had periods where he seems quiet, contemplative.  I briefly worried that he was becoming depressed with his altered body.  The NMDP literature warned us that this could happen at around one year post-transplant.  Jeff is so good-natured and strong that it didn’t take long for me to see that he was handling it all pretty well, better than most would, I think.  He did confess to me that it really bothered him that he had to rest frequently while on the roof in the heat (go figure!).  There was no reason for him to do that project this week except, I think, he was bent on proving that he could do anything he used to be able to do.  He may have had a breakthrough in realizing that he can’t - and that is o.k.  He can’t run up steps either.  Oh, well.  His need for naps… “Naps are fun!”   Well, none of those things will alter his life all that much.

In addition to all of Jeff’s tests and doctor visits this month, our family had other things going on.  We learned that Keith had been injured in a martial arts training exercise at boot camp and was relocated to the Medical Rehab Platoon.  He has an Acromioclavicular separation which will take time to heal.  When he returns to regular training, he will be put into a platoon that is on or around the same training day as he was on at the time of his injury.

Also this month, my father’s health took a sharp decline and after a week in the hospital and about a week in a nursing home, he passed away on July 17^th.  When Jeff was diagnosed with MDS, Pop said that he wished he could take Jeff’s disease from him.  Pop was ready to go and is now pain-free and at peace.

The night my sister and her daughters flew east from her home in Aurora, Colorado, for our father’s memorial service, her husband was called to area hospitals to minister to his parishioners who’d been shot at the local movie theatre.  Five of their young people were in the theatre and two of the young men were shot when they threw themselves over their dates (chivalry is not dead!).  One of the young women got shrapnel in her head.  It was hard for Tracy to be here when her husband and their friends were dealing with all of that.  Her daughter, Lissa, agreed to spend a day in Aurora before flying home to California.  She and daughter Lauren were able to support their dad and report on his well-being and the victims' conditions while Tracy stayed here an extra week. 

It was really nice to be able to spend a lot of time with family this week, remembering Pop and supporting Mother.  Prayers would be in order for the victims of the Aurora shooting, those who love and support them, my mother and my family as we mourn my father, and cancer patients everywhere.  Wow.  That’s a pretty heavy load.  Thanks for your help.

Staycation-Vacation and One-Year Biopsy

Jeff and I took some time off this week.  We combined day trips, a painting project, the Claus family picnic on the 4^th and a 3-day trip to Lancaster.  Our combo staycation-vacation was split mid-week by Jeff’s bone marrow biopsy. 

One of our day trips should actually be called an evening trip.  Jeff is on two medications which make it very easy to sunburn so we left late in the afternoon to avoid the sun.  We drove to Asbury Park, NJ, home of “the Boss.”  We ate dinner at a Cuban restaurant, walked the boards and the beach a little, then drove home.  It was very nice.

We painted Keith’s room – ceiling, closet and two coats on the walls all in one day with ample time for Jeff to nap while the paint dried between coats.  It is a small room and it is rewarding to have finished the project.  Well, we still have not had a chance to put the room back together again.  Of course, there is no hurry since Keith won’t be using it until after boot camp – another eight weeks.

The biopsy was Jeff’s one-year-from-transplant biopsy, a little late.  Drs. Rager and Porter do not expect any weird results.  This is just a milestone biopsy, protocol.  Dr. Porter even went so far as to say, “This might be the last one you’ll ever need.”  Jeff was supposed to have his “childhood” immunizations, too, but the office was very busy.  It was Tuesday the 3rd, the day before a holiday, and Jeff’s 2:30 appointment ended up being after 4 pm.  When we left after 5 pm, the office staff had all left already.  The shots are given in the chemo treatment area across the hall; we never made it there.  The immunizations will have to be done at his next appointment at the end of the month.

In the meantime, Jeff will have a dexa scan to check his bone density.  This is typically done for all women at one year post transplant and for men who have been on steroids for a prolonged period of time.  Dr. Porter also wants Jeff to have another pulmonary function test to make sure there is no lung damage from the pre-transplant conditioning.  This will be his third; he had a baseline done before transplant and one at about 8 months which actually showed better results than pre-transplant.  He also needs to see the ophthalmologist about his blurry vision which could be due to his meds (a couple of them carry warning labels about blurry vision) or treatment or… his age, perhaps.  Dr. Porter keeps mentioning how common cataracts are among transplant patients. 

Dr. Porter noted that Jeff’s rash was a little worse than the last time he saw him.  I pointed out that some spots are closer to his eyes and mouth.  That worries me a little because I have heard of cases where it gets in those places.  Neither Dr. Rager nor Dr. Porter is too concerned about it, confirming that waiting until the 18th to see the dermatologist is o.k.  I guess skin GVHD doesn’t progress too rapidly or if it does, they’ll see him sooner.

Our vacation was three days in Lancaster.  On the way out there, we stopped at Shady Maple to shop and have lunch.  The trip exhausted Jeff and he took a good, long nap at the hotel when we arrived.  We couldn’t have squeezed more fun into the next two days!  We tasted wine at a couple of wineries, toured an historic home (Suzanne Wright’s in Columbia), outlet shopped, ate at a stainless steel diner made the year we were both born, swam, etc.  We did not feel the need to eat at the Smorgasbords (besides, Jeff isn’t supposed to do buffets and, well, family style with strangers, maybe not?) so one night we had dinner at a lovely inn and another at a chain restaurant Jeff had never tried, Texas Roadhouse.  We ate Texas-style food in Amish country with a waitress named Fataweh (from India).  Gotta love cultural diversity!

We saw lots of buggies, lots of quilts, lots of farmland - soul soothing, peaceful.

Is it sunburn? Is it clogged sweat glands? No, it’s GVHD!

Jeff has been having skin issues for about a month which warranted an extra trip to Dr. Porter’s office.  Dr. Allison Rager wanted to eyeball Jeff’s face which is a little rough right now.  However, Allison was going to be in class today and wasn’t going to be in the office at all.  She called before we left the house to tell Jeff that she would miss him.  Jeff said she sounded disappointed.  She confirmed that Jeff should have labs drawn today but he’d have to settle for Nurse Heather and Dr. Porter.

At the Perelman Center we had our beverage treats at Gia Pronto and then got in line for the elevator.  Jeff started to chuckle.  “Look up,” he said.  There was a man on his knees directly overhead.  He was washing the glass roof!  We have seen workers on that cantilevered roof before but never from the vantage point directly beneath them! Cool!

We checked in with reception at Dr. Porter’s office.  The receptionist always asks, “Are you having labs today?”  And the answer is always, “Yes.”  Today, Jeff said, “Yes, they just can’t get enough of me.” 

After labs were drawn and vitals checked (good bp, good weight), Heather examined Jeff’s face.  She said, “Wow!  That is classic chronic GVHD.”  She commented that it had been over a year since transplant and Jeff remarked, “Yes, I am one of the 80%.  Each year it will get worse…”  Still, Jeff kept Heather laughing throughout the examination.  She thanked him for the entertainment which she said she needed on a Friday.  Jeff showed off his brand new UV50 shirt and his new Aussie-style wide-brim hat which are meant to keep him from burning so easily.

Heather asked more questions about when the skin rash began (probably the day after Jeff’s last visit to the Perelman Center) and when it appears worse and does it itch (no).  It is a little tender like having pimples.  She suggested Jeff see the dermatologist again but let’s see what Dr. Porter says.  We told her it was our experience that Dr. Porter is never impressed with skin conditions.  She laughed and said this would be different because it was occurring during a steroid taper. 

It turns out that Dr. Porter agreed.  Jeff has GVHD.  They will set up an appointment with the dermatologist who, we are told, has “tricks” and a cream that may enable Jeff to continue the steroid taper.  The goal is still to get him off steroids. 

Dr. Porter said, “You have something I never want to see in my office.”  Jeff was horrified.  What can be worse than what has already transpired?  With some concern, he asked, “What?!”  Dr. Porter said, “A tan line.”  Dr. Porter assured Jeff he could go deep-sea fishing with the guys from church if he takes care to lotion and cover up.

He wants Jeff to keep his original appointment on July 3^rd for his “childhood” immunizations and a bone marrow biopsy.  Jeff was not thrilled to hear that.  Dr. Porter said that Allison would do the biopsy.  Jeff asked, “Has she done it before?”  Dr. Porter said, “No, but we’ll teach her the day before.”  Jeff said, “Yeah, on a dead pig.”   

Joanne wasn’t in the office today but I emailed her to see whether she has heard anything from Jeff’s donor.  Maybe soon.    

On the way home, Jeff wondered, for the umpteenth time, whether there would be a letter from Keith.  In Keith’s middle-of-the-night I-got-to-boot-camp-safely call, he said that he would write in 7-10 days.  It has only been 10 days.  However, when we got home, Jeff checked the mailbox eagerly.  There was no letter from Keith but there was a letter from Wichita, Kansas.  That was a puzzle.  Jeff turned it over and over and asked, “Who do we know in Kansas?”  I said, “Open it.”  It turns out that while en route to boot camp, Keith met a Marine family in line at the TGIF restaurant in the Atlanta airport.  They invited him to have dinner with them and told him he could order anything he wanted.  They had nice things to say about Keith, the Marines, and their son who is serving in Afghanistan.  It was a very nice letter, good enough to get us by until we hear from Keith ourselves. 

Robin Roberts

This week we had many phone calls and emails asking whether we had heard that Good Morning America’s Robin Roberts, a breast cancer survivor, now has MDS.  When Jeff and I first heard the news, we wondered whether her announcement would encourage minorities to register with the National Marrow Donor Program.  We knew there was a great need for minorities on the registry.

When we heard that Robin’s sister was a match we hoped she would still put out a request for people, particularly minorities, to register.  And she did!  A friend at work told me she’d heard that the NMDP website was overwhelmed with requests for swab kits!  She sheepishly admitted that she still has not registered although I told her of the need for minority donors.  (Get busy, girl!)

When Jeff was diagnosed, he was told there would be no problem for a man of European descent to find a match.  Those words made our hearts sink for those who would not hear the same message.  Ethnicity matters in finding a match.  Sex and blood type do not.  Thus, Jeff’s XX blood and marrow. 

Jeff quipped that since Robin Roberts’ secondary cancer is MDS, maybe his would be breast cancer.  Oh, please…

First Bike Ride

Jeff spent some time this afternoon sprucing up our bikes.  We couldn’t go for a ride until evening because Jeff has been having skin issues, probably from his meds that cause him to burn easily.  In the meantime, we went shopping for lightweight long-sleeve shirts and another floppy hat which, hopefully, will help.  When it was nearly dinnertime, I suggested we go home from our shopping trip by way of Shady Brook farm.  I reasoned that ice cream might spoil our dinner but who would know?  With Keith off to Marine boot camp at Parris Island, we are genuine empty-nesters completely, free of the necessity to set a good example for our children.  Jeff remembered that Shady Brook Farm never makes Rum Raisin and he proposed Goodnoe’s instead.  Good idea!  Goodnoe’s did not disappoint.

By the time we got home, the sun was no longer harsh and we set out on Jeff’s first bike ride since his BMT (and mine, too).  His goal was to ride the canal until we reached Black Rock Road in Yardley.  We had been seeing and smelling smoke at home and it continued along the canal but since we did not hear fire trucks, we assumed it was wafting over the river from New Jersey.  I kept thinking it probably wasn’t good air for exercising but the smell wasn’t very strong.  We pedaled on.  We made it to Black Rock Road and then Jeff espied customers walking the canal on the other side of Black Rock Road.  We waved.  I told Jeff, “They won’t recognize you, on a bike, with a helmet, looking different than you did the last time they saw you.”  We pedaled over and chatted.  They said they had just mentioned Jeff that morning, wondering if he was ready to work.  They told him, “Whenever you’re ready.”      

We rode home and enjoyed hot dog salad.  If we had ice cream for dinner, does that mean our hot dog salad was dessert?  Here is the recipe:  pile a plate with lettuce (we used red leaf lettuce from Kerry and Theresa’s CSA), then a scoop of potato salad (ours had balsamic vinaigrette dressing), and top with a sliced hot dog (leftover from the picnic Jeff cooked for my parents).  If they gave prizes for empty-nesting, we’d be contenders for first place!

Sadly, a childhood friend of Kerry’s died suddenly, tragically last week.  Kerry, Jeff and I attended the memorial service.  During calling hours, we spoke with Debbie A., another cancer survivor from town who expressed her feeling that dealing with cancer is not so bad compared to the very sad loss of a child.  Jeff agreed. 

The sad occasion nevertheless gave us an opportunity to see people whom we had not seen for a long time.  An older couple from town, and former customers of Jeff’s, sat three pews behind us.  When we were leaving the chapel, Jane shook Jeff’s hand and said, “When I first arrived, I thought you looked really, really good and then you walked into the room!”  It was Kerry she had first seen and thought he was a recovered Jeff.  Lookin’ good indeed!  She never did say whether she thought Jeff was looking well.

The Birthdays

Jeff and I told Kim that if she made ice cream for the birthday party (hers and her dad’s), we’d pick her up in the city instead of from the train station in Yardley.  She made sour cream chamomile ice cream and blueberry sorbet.  These would complement the chocolate cake that Keith and I made.  Jeff, Keith and I had dinner at Pietro’s on South Street and then met Kim at her apartment.  We packed her ice cream in ice and headed home for the rest of the evening’s festivities.

  

Jeff noted that a lot of “crappy stuff” happened this year.  I recalled that he was the only one at last year’s party who didn’t seem to be enjoying himself.  Kim remembered that we had served Tastykake krimpets at the hospital.  I remembered that Kim and I left the hospital and went to Pietro’s to celebrate her birthday while the rest of Jeff’s new marrow flowed into him.  Funny!  It was by chance that we’d eaten at the same restaurant this year – this time with Jeff.  What a difference a year makes!

We enjoyed our ice cream and cake (one pink candle representing Jeff’s year-old marrow and two yellow candles for the 26-year-old) under the chili pepper lights in the screen house and then we headed for the hot tub.  Some of our neighbors set off illegal fireworks – a regular holiday occurrence which ordinarily irritates me.  Tonight, between the joy of our celebration and the serenity of the hot tub, the fireworks seemed appropriate.  Even Giblet was in a Zen state and was not overly bothered by the noise.  Fun was had by all! 

Day 363 –Team Bist du Stark

This will be our last blog entry which is marked by day number.  I have already begun to say that Jeff is “one year out from transplant” which is the lingo in the biz, if you want to know.  It is so exciting!  Jeff has gotten off easy in one way, at least:  no return trips to the hospital, something we were told is not uncommon during the first year.  I shouldn’t count chickens before they hatch but things look good for these remaining three days.

Kim sent us this official picture of Team Bist du Stark from The Dude Hates Cancer bowling event last August.  If you were there, or if you were one of us who were anxiously awaiting the return of our young people to the safety of hearth and home, you will remember that the event took place during a terrible storm.  Soon Kim will be organizing this year’s team so stay tuned.

It has taken a team to see Jeff through this last year and a half.  I would not have wanted to endure this journey without the support of family and friends.  I know Jeff feels the same way.  We have been lifted and embraced by so many people in many, many ways.  Some prayed, some cooked, some mowed, some talked, some listened, some drove, some hugged, some cleaned, some visited, some sent cards and their well wishes.  Others collected blood, read lab reports, counseled, prescribed medications, cleaned hospital floors, administered medications and then watched for side effects, performed PT.

 And one gave her marrow.

Three cheers for Team Bist du Stark!

xoxoxo