The Light of Our Lives and Light the Night

Jeff spent his first full day with Rosie yesterday.  Jeff and Rosie both had morning and afternoon naps.  When Kerry got home at the end of his work day, he asked his dad whether it had been a long eight hours.  Jeff insisted it was not.  However, as he walked down their driveway to his car, he counted up the hours he’d spent with Rosie and figured it was more like 9 ½ hours.  Who’s counting?  Jeff was tired when he got home but full of stories about his successes giving a very reluctant Rosie her bottles, the songs he sang - “My whole repertoire,” and the blow-out poopy diaper.  We went for a walk after dinner in an attempt to energize ol’ Grandpop but it only slightly delayed his early bedtime.  Perhaps there would be dreams of Rosie, the light of our lives.

On Saturday, October 19^th, we will be participating in the Leukemia & Lymphoma Society’s Light the Night Walk at Bucks County Community College.  We are hoping to have lots of friends and family join us to celebrate Jeff’s survival and to raise money for research that can make a difference in the lives of blood cancer patients like Jeff.  Click here or use the link on the sidebar to visit our team page, join our team or make a donation:

Bist du Stark? (Are You Strong?) 

Mr. Frog Bites Off More Than He Can Chew

Today marks the one-year anniversary of my father’s passing and the day began with my sisters, brother and I passing thinking-of-you text messages.  Nancy’s message included thoughts about it being an “auspicious day” for Keith to head to Afghanistan. I read her message just before walking into my office. (Thanks for that, Nancy.)  A quick dash for the tissue box, a couple of hugs from my co-workers, and my workday began.

My cell phone chirped several more times – Judy, then Harry, then Tracy all texted short messages.  We were thinking of Pop, of the day he died, and the year’s events – Mother’s death six months after Pop’s, babies born, life lived.

In the midst of my siblings’ text messages came one short message from Jeff, “Mr. Frog is dead.”  Oh!  Too bad!  We’d enjoyed the bullfrog’s 4 a.m. concerts from our tiny little pond.  The smaller frog had already disappeared.  The frog, formerly known as Three-O’Clock, had grown quite large this summer.  We joked that he grew by the approximate size of the smaller frog, “Maybe he ate it.” 

My work was interrupted once again when Keith called.  He was not yet on an airplane and it sounded like he had a loooong trip ahead of him – commercial flight to Kazakhstan, then military flight to Afghanistan.  He’d been awake since 7 a.m. yesterday.  Poor guy.

No sooner had I returned to my desk when Jeff called.  He’d missed Keith’s call because his cell phone was in the truck for the couple of hours he was working.  Jeff also reported on the means by which the bullfrog died.  Spying a dead bird in the pond (this seems to be happening a little more frequently this summer than most), he grabbed the pooper-scooper to retrieve the carcass.  As he lifted the bird out of the water, the frog came, too!  Evidently, the frog tried unsuccessfully to swallow the bird.  Jeff tried to yank the little wretch out of the frog’s mouth in the hopes that the frog could be revived but it was too late.  Both creatures succumbed from the trauma.

As I hung up the phone, I reminded Jeff that we had Chicken Lessons with Emily when I got home from work.  We are finally reciprocating for all the dog-sitting Emily has done for us.  We would be taking care of her three chickens which lay three different colored eggs.  We’ll be paid in eggs.

Despite the heat and humidity, we decided to walk the three blocks to Emily’s house.  Emily took us out to the coop and pointed to two of her birds and commented, “Hmm.   Where is the other one?”  She opened the hutch door and made the sad discovery.  I took baby Lincoln off her hands while she dealt with the remains.  She is a stoic, pragmatic animal lover yet we felt sorry for her loss.  We discussed methods of keeping the hutch cool during the heat wave, got our instructions for feed and water and closing them in at night.  We enjoyed a short visit before heading home.

On Friday, Jeff went to the Perelman Center.  Nurse Heather thought he looked good.

“I know,” he said.  “People can’t see what I’ve been through.  It was more fun when I looked like I was dying.”

Heather laughed.  Jeff told her he was going to meet his donor and that his donor makes him think about why bad things happen to good people.  He related Nicole and Nicholas’s story.  Heather cried.  She asked if she could share their story with her mother who doesn’t understand why babies get cancer. 

Dr. Porter decided Jeff didn’t need labs drawn.  Then he changed his mind.  I was relieved to check those liver function numbers since they were improved a month ago but not back to where they had been before GVHD.  Although his numbers are better now, Dr. Porter said Jeff would have to stay on the current dosage of Cellcept for another six months before he would consider tapering. 

Our little Rosie was baptized on Sunday.  A party at Kerry and Theresa’s followed.  It was lovely – and hot.  Jeff and some of the young men played horseshoes.  Last summer Jeff could not play quoits (a 21-foot throw) and this summer he can play horseshoes (40-foot throws).  The next day Jeff’s arms were a little bit sore – that’s all.

We are thankful that Jeff is doing well and we are praying for safe travels for Keith and all those serving our country.    

Big Candy, Big Britches

Jeff believes that his candy dish is getting bigger.  He is, of course, referring to the analogy of the candy dish as the fixed amount of energy he is given each day that can be consumed all at once or doled out carefully over the course of the day.  In fact, most days he seems to be able to accomplish more and last longer. 

Last night he proudly suggested that we list all the things he fixed or made in the last couple of days:  the dryer, the gates in our yard that weren’t closing very well, the pond pump and, grandest of all, he made a very regal throne for Vacation Bible School (a whole-day project – and can you believe we forgot to take a picture of it before we delivered it to church this morning?).

Of course, all these projects at home are in addition to the nearly full-time work he is doing, most recently kitchen renovations at Judy and Mark’s house - with some help from the homeowners.

And last weekend we even went out to see a show at Langhorne Players.  And Jeff managed to stay awake for the whole show. 

All this increased activity has resulted in just enough weight loss for Jeff’s britches to be a little droopy, extra roomy.  Now I can say, “I told you so.”  It wasn’t too long ago that he decided his old body had fully returned and his post-transplant skinny wardrobe could be donated.  I advised holding onto the few things we had bought for him but he saw no reason to do that. 

When Friday’s lab results were posted online, I looked at them and used the graphing function on Penn’s website to compare the results with those from before this round of GVHD.  I told Jeff, “In my unprofessional opinion, it looks as if your blood counts are pretty good and your liver function is improved but not back to where it had been.  I suspect they’ll keep you at this dose of Cellcept awhile longer.  Don’t expect a phone call from Dr. Porter’s office with any new instructions.” 

Jeff agreed, “Well, my next appointment is in about a month.  We’ll see then.”

We had a very nice Father’s Day cook-out here today with our little Rosie and her parents.  Life is good.   

Please pray for continued improvement of Jeff’s liver and also for a young father, Andy, a neighbor of a church friend, who is at Day 0 plus 9.  His two young children did not have their daddy at home this Father’s Day. 

The Birthday Kids

Jeff took a break from our weekend yard work and settled on the sofa with Giblet.  Within minutes, he'd become very still and I thought that I'd be finishing our projects without Jeff's help.  I was in the kitchen cleaning up lunch when I heard his quiet voice, "I wish I was Mexican." 

When I laughed, he asked, "Don't you want to know why?"

"I know why," I told him.  "You like siestas."

In fact, he did manage to do more yard work that afternoon and the yard looked lovely for our Memorial Day picnic.

Here are the birthday kids at our picnic.  

Birthdays and Broken Things

My father used to say that if your marriage outlasts your appliances, it looks good for the long run.  By his measure, our marriage is doubly strong as some of our replacement appliances are showing signs of age. 

At the time of Jeff’s diagnosis and the start of his treatments, we looked at our finances and decided that if we are frugal (when aren’t we?), we could manage on one salary as long as we didn’t have too many unexpected expenses, like budget-busting appliance replacements, too close together.  Just such a period of time was highlighted – with the help of our superdog, Giblet - one night last week. She woke us up at 3 a.m. with her nervous trembling.   It seemed as if there was some dire danger that only her canine ears could discern.  Was a storm coming?  I reached for the iPad and checked the Weather Channel.  Clear weather all around.  Finally, I got up to put Giblet out.  She was disturbed, sticking close to my side as we went downstairs and to the back door.  As soon as the door was opened she raced out, with no coaxing as would have been required if a storm was coming.

Giblet took her time, enjoying the fresh springtime air.  I rested my forehead on the cool glass of the back door, wishing it were my pillow.  Several minutes had passed when I heard a quiet chirp of a smoke alarm battery.  Ah, that explains it.  Easy fix.

Giblet finally decided to come inside.  When I got back to bed, I told Jeff why Giblet had been upset.  We began to list the things that had recently broken or had begun to give off warning signals.  In no time flat we produced a sizable list which made us laugh at the state of things.

Broken things:

  1. printer

  2. dishwasher

  3. lawn mower

  4. pond pump

  5. TV

  6. dryer

  7. bathroom scale

  8. stove clock

  9. Kim’s toe

10. my laptop

11. moto-massage

Status report:

1. Printer has been replaced.

2. The dishwasher must be run by Jeff who can find the dial’s sweet spot to start it while Amy cannot.

3. Marrazzo’s persuaded Jeff that the lawn mower needed the carburetor cleaned, told him how to do it and sold him the cleaning solution.  Jeff invested a half-hour to the project and got it running in plenty of time to mow the long grass for our Memorial Day picnic.

4. Jeff replaced the pond pump while the frog known as “3-O’Clock” screamed at the intrusion.  Amy did not believe that the frog “screamed” until she herself scared the frog, saw it leap into the water and heard a screech.

5. The TV in our bedroom freakishly cycled through days-worth of our programmed weekday a.m. on/off settings - in a space of a few minutes in the middle of the night.  We replaced it with another TV we had in the house.  

6. Jeff has to run the dryer because he can fool it into working and Amy cannot.  He intends to take it apart – someday – and fix it.  Amy intends to hang the wash outside.

7. Jeff lifted the bathroom scale to vacuum under it and it got stuck on 160 pounds.  Since Jeff would like to pretend he weighs 160 and Amy definitely does not want to weigh 160, we replaced the scale with our old one which had been stuck in a closet because it works fine but our presbyopic eyes have trouble reading the numbers.  We squint and get by.  Kim notes, “It could be a 2-person job.”

8. The stove clock is missing the top left line of the hour’s ones place so that one evening, after hours of working in the yard, it read 6:52 instead of 8:52 making us believe we had been very, very efficient.

9. Kim’s toe was cut and bruised (Jeff calls it a hema-TOE-ma) when we were moving furniture around at Kerry and Theresa’s house to get ready for baby Rosemary.  Shoes hurt, sandals help.  Good thing it’s sandals weather.

10. My 8-year-old laptop balks at all requests to start-up.  Jeff says it needs a pull cord like a lawn mower.  That would be rough treatment for delicate electronics but it aptly describes the effort of turning the darn thing on.  We hope to replace it before school starts in the fall.

11. The moto-massage jet on our free hot tub stopped its up-and-down undulating motion.  Jeff discovered it just needs a nudge – finger poked into the jet opening - to get it going.

Yesterday we went to church with Kim in the city, helped her plant her city garden (potted plants) and brought her home to celebrate Memorial Day, her 27^th birthday, Jeff’s New Birthday (he’s 2!) with us.  We are thinking of Nicole for whom today is the 2^nd anniversary of her donation of bone marrow to a man she did not know.

This morning is a bright and beautiful one.  The Morrisville parade will be a great way to start our celebrations – and to remember those who have sacrificed their lives so that we can enjoy the freedoms we take for granted.  Here’s hoping you are having a pretty day wherever you are.

100% Nicole, 100% Rosemary

Yesterday we went to Penn’s Perelman Center for Jeff’s two-year check-up.  Instead of taking the train, we drove because we planned to meet my sisters late in the afternoon to prepare for our garage sale to dispose of the last of my parents’ “treasures.”  We were driving down I-95 when Jeff started to chuckle.  He read the company name on a panel truck, “Colonial Electric.”  That is too funny!  He thought their logo should have been a kite and key. 

We had time for breakfast at Gia Pronto where Jeff’s coffee was too hot and my hot chocolate was a little cool.  Oh, well.  Then up to the second floor for Jeff’s labs and doctor visit.  The lab nurse called, “Lou.” 

Jeff said, “You called my last name?”

The nurse replied, “No first names here.  It would be a HIPAA violation.”

We thought that was odd, usually they call first names.  In fact, we noticed the nurses from the doctors’ offices and the receptionist area all called patients by their first names.  Someone is confused, we think.  These are the things that amuse us as we wait and wait and wait.  Today was particularly slow.  We were glad we had the iPad with us.  We’d brought it because we are good grandparents, ready to show pictures to anyone who asks and to those who don’t ask but look like they might if they know what’s good for them.  We watched the Rosemary photo “channel” - All Rosemary, All the Time – twice.    Then we read magazines we had downloaded.  Finally, Jeff was called to the exam rooms.  A stop at the nurses’ station revealed his excellent bp (110/70) and   excellent heart rate (58).

Dr. Allison Rager walked into the office with a “baby bump.”  We’d seen her in February but must not have noticed that she was expecting; the “bump” was probably hidden by her lab coat.  We asked her due date – May 31^st!  Of course, we showed her pictures of Rosemary and she oohed and aahed appropriately.  She told us that she was moving to Pittsburgh now that her two-year fellowship is over.  We will miss Allison.  She was the doc who monitored Jeff’s transplant and now she leaves him at his significant two-year mark. 

The visit was otherwise the same routine as usual: labs, visit with Allison and then both she and Dr. Porter.  We learned that the chimerism test that was done in February shows Jeff’s blood is still 100% Nicole’s.  That’s great!  And Jeff’s blood counts were good.

Jeff asked Allison about Nicole’s allergies to penicillin and sulfa drugs.  She explained that they don’t know enough about how much of the donor’s immune system transfers to the recipient and that is why Jeff takes a sulfa drug three times a week – the risk of infection outweighs the possibility that he would also be allergic to the drug.  It is also the reason for the childhood immunizations that were scheduled for this visit: DTaP (he needed this for taking care of Rosemary, too), MMR, Hib and Strep/Pneumonia. 

The liver function tests always come back late in the day after we’ve gone home so, as usual, Allison promised to call later with the results and instructions about Cellcept.  Dr. Porter assured Jeff that it was still possible to eventually wean off of the immunosuppressant although some people end up staying on Cellcept indefinitely.  He also reminded us that hitting the two-year anniversary from BMT is really significant. 

I admit to shedding a few tears when we said goodbye to Allison.

Back to the waiting room for more waiting and waiting for his appointment across the hall in the chemo area.  These appointments for immunizations confuse staff on the physician/lab side of the hallway because they are given in the treatment rooms.  Patients there are usually getting blood transfusions or chemo treatments.  One nurse said, “Immunizations?  Do we do that here?”

I noticed a woman scheduling her next appointment at the receptionist’s desk.  She had that beautiful look cancer patients get when they’ve been through hell and are recovering - a little peach fuzz on the head, a relaxed face, and eyes that seem to say, “Nothing can scare me now.”  When the oncologist’s office gives you an appointment, you just go.  It is unusual to say, “That date doesn’t work for me.”   But this woman was bold enough to say, “Well, I was going to have my hair done that day.”  Good sense of humor - an essential tool.  

Jeff noticed that people were being called ahead of him so we asked how much longer we might expect to wait.  Although he had an appointment, the order for the shots was not sent properly so he was only just now (at our prompting) put in the queue.  More waiting.

Finally, he was called to the treatment room, got his two subcutaneous shots and two in muscle tissue (the ouchy ones), and off we went.  We’d been there for five hours. 

Late in the afternoon Allison called with the results of the liver function tests.  They were only slightly better so no taper is possible at this time. More blood work next month to make sure there is continued improvement and avoid the need for steroids.

There was no time for the customary post-doctor-visit-nap until after the garage sale at my parents’ house on Saturday.  Jeff made up for it by taking a 3-hour nap after which he looked, well, not very much improved.  He had come down the stairs, heavy-footed, went right to the sofa and sat on the edge, rubbing his eyes, then propping up his head, elbows on knees.  Even dinner did not revive him much.  So I was surprised when I heard him stumbling up the stairs, struggling with something.  It was the vacuum hose.  I thought, “Oh, so we’re going to do some housecleaning.”  I grabbed a dust rag and we together we zipped the upstairs.  The activity helped. 

We were able to see our new granddaughter several times this week, changed diapers, talked to her, soothed some cries and delivered lots of kisses.  How lucky are we? 

Blood Connections

 Jeff and our little rosebud, Rosemary (born May 5^th)

This moment made possible by Jeff’s donor, Nicole.

And, of course, Kerry and Theresa, and

the good Lord!

Last Friday, Jeff and I enjoyed talking to Nicole for almost an hour.  We put Jeff’s cell on speaker to save his fingers from cramping (as happened during their first call) which allowed me to participate in the conversation, too. 

We asked Nicole more questions about the donation process.  For instance, “Did you feel that Gift of Life prepared you for the process and your recovery?”  (This was a criticism we’d heard from another donor who said she did not feel cared for once the harvest took place.)  Nicole knew she would not be able to lift her one-year-old for two weeks and she expected the two-month recovery.  However, she was unprepared for the 2 ½ hour procedure.  And the anesthesia made her sick. 

“Were you able to enjoy your visit to New York at all or was it all hospital and hotel rooms?” we wanted to know.  She confessed to being “bullheaded,” determined to take advantage of two days in NY to tour with her mother.  They rode a bus and got off and on many times.  She admits it was probably not a good idea and that she should have rested.

“Was your mother very worried about you?” I asked but was pretty sure I already knew the answer.

“Oh, yes!” Nicole confirmed.  She is very close to her mother and they speak on the phone almost every day.

Conversation moved to her children who are adorable (we’ve seen them on Nicole’s Facebook page).  Kindness and generosity are taught early in Nicole’s family.  Her three-year-old daughter recently donated 10” of her hair to Locks of Love: http://www.locksoflove.org/

Nicole suggested that we take Theresa for a ride in a car with bad suspension to bring on labor.  As we wrapped up our conversation she reminded us to let her know when there is baby news.

It turns out that after a tiring day of flea-marketing with Kim and me on Saturday, Theresa decided to mow the lawn.  I guess their ride-on mower worked as well as Nicole’s suggestion because that evening labor pains began.  We are very happy to be members of the Grandparents Club.  To quote my brother, “It’s pretty awesome.” 

Plus Three Pills and a 6-Hour Nap

While Theresa, Kim and I attended Theresa’s baby shower in Harrisburg this weekend, Jeff and Kerry worked on Kerry and Theresa’s family room.  Big changes there – the hardwood floor is installed, the ceramic tile floor in the laundry room is done, they primed all wall surfaces, worked on the stairs.  I call this frenzy of activity “Jeff’s version of nesting.”  He says he wants to make sure he has an awesome hang-out place for himself and the baby but mostly I think he wants to please our daughter-in-law.  The weekend was exhausting for Jeff.  But early Monday morning (7:50!) Jeff had to be at the Perelman Center for labs.  No opportunity to sleep in. 

Jeff arrived at the train station in Yardley as a train pulled up.  He ran for it, believing his train was early (There is no such thing as an early train, right?).  He realized his mistake when the train arrived at 30^th Street Station on the wrong track.  He could tell it was not destined for University City.  Oops.  He got off the train and boarded the one he should have taken to begin with and ended up at the Perelman center only a little bit late.

 

After his stick, he texted me “All done.”  He snoozed on the ride home.  All day I resisted the temptation to call and see how he was doing because I guessed – correctly it turns out – that he was going right back to bed.  I got home from work after 5 p.m. and was greeted with, “Guess what time I laid down for my nap?”  He sounded like a little kid asking me to make a guess but expecting to stump me.

“10:30,” I said.  I knew that was what time he’d returned home from the city. 

“Yep.  Guess what time I woke up?” he asked, his tone emitting confidence that he could still shock and amaze me.

“Just now?!” I guessed, alarmed.

“After 4 p.m.  I slept through lunch!  I would make a good baby, wouldn’t I?” 

This marathon nap, miraculously, did not affect his ability to sleep at night.  He was back in bed around 9 p.m. and dozed solidly through the night.

Tuesday night at Gilda’s Club we had the opportunity to share the good news that we’d been in contact with Nicole, Jeff’s donor.  Our networking group was very happy to hear about her and about the transplant experience from the perspective of the donor – at least so far as we understand it. 

A new member of the group, Sam, prompted introductions - including diagnosis and brief treatment histories.  A lot of the conversation involved cancer “war stories,” whereas last month, with only the regulars in attendance, we hardly discussed disease.  Sam smiled often at our raucous laughter and our jokes.  We even got our facilitator, Marianne, to admit that we are her favorite group.  Lincoln commented that he expected a morose, sickly bunch of people when he joined Gilda’s Club but that he was happy to find our group does not fit that description.  In the car on the way home Jeff said, “I think I help to make the group laugh.”  I agreed that laughter is his particular talent and contribution.

I checked Penn’s website often to see whether Jeff’s lab results had been posted.  By Wednesday afternoon I was getting concerned that Jeff had heard nothing, despite our email nudge to Dr. Porter’s office.  Late Wednesday afternoon Dr. Allison called with the disappointing news that his liver counts were doubled what they should be and that he would have to take four Mycophenolate (Cellcept) pills per day to keep the GVHD in check.  This dosage is double his original dose.  Drs. Porter and Allison felt that he had tolerated the Cellcept well and increasing his dosage of Cellcept is preferable to putting him back on steroids.  He’ll have to be very careful in the sun and we probably should familiarize ourselves with the side effects again.

Dr. Allison was apprehensive about Jeff’s reaction to her instructions.  He took it in stride.  Cellcept must be taken on an empty stomach so it will cramp his style a little bit.  He will not be able to eat breakfast early or snack late at night.  Oh, well. 

Another area of neuropathy has developed on his left shoulder.  Instead of the hypersensitivity of his feet and right shoulder, this one is completely numb to the touch or when water hits it in the shower.

We heard this week that Lois, a member of Jeff’s Cancer Coterie and a former customer, passed away.  She had been in a bad way for a long time and, thankfully, she suffers no more.  Prayers for her husband, Bob, please, and all who have lost a loved one to cancer.