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.

And His Name Was Nicholas

So, the fabulosity of my day (ask me about it; I’d be happy to share) was overshadowed by Jeff’s marathon phone call (1:31:20) with Nicole.  But that’s o.k. 

Jeff texted me this morning to tell me that Nicole had emailed to set up a phone date for 7:30 p.m. when her children would be down for the night and she could give him her full attention.  She was true to her word.  At 7:35 p.m. Jeff’s cell phone rang and he and his blood sister made real contact in real-time.  I was a happy eavesdropper.

First things first.  The two swapped stories of their experience, asking each other questions and marveling at the wonder of it all.  Nicole lives north of Atlanta but her local hospital did not have a bed for the harvest so Gift of Life flew her and her mother to Mount Sinai in New York twice – once for a physical and once for the harvest.  The harvest involved five plunges into her hip.  Because of her height and weight there was some concern that there was not enough product for Jeff’s height and weight.  (Ugh!)  Afterwards, she returned to the hotel and, she said, “Your body knows what it needs.  I craved steak.”  She was not permitted to lift her one-year-old for two weeks and she reported feeling fully recovered in about two months.  (There!  I knew it could not have been easy to give up 2 liters of bone marrow.  I’m thinking that plane ride home couldn’t have been very fun.)

It was disappointing to learn that Nicole had given her consent to share contact information on the first anniversary of the transplant and yet we only got the word yesterday.  May 27^th will be the second anniversary!  I wonder if volunteers process the requests for donor/recipient contact or if there just aren’t enough staff members devoted to it.  As Jeff says, resources should be focused on those with the most need and this would not constitute vital patient care.

With their BMT war stories out of the way, their conversation turned to other things.  Nicole asked about Jeff’s emotional state throughout his ordeal and she asked about his faith.  She mentioned that her little cousin, whom we named “Luke” because his name had been redacted from Nicole’s letter, was actually Nicholas.  The short life of Nicholas started the chain of events which put Nicole in a position to help Jeff.  They talked about God’s plans, His “choreography,” and the good that can come out of life’s challenges.  Jeff mentioned the role he has found himself in at Gilda’s Club, supporting those who are beginning the transplant process. 

About 30 minutes in, Jeff said, “Oh, there are still 50 things I want to ask you.”  I whispered, “You don’t have to ask them all tonight.”  Neither one of them seemed to be at a loss for words so they talked on and on.

There was conversation about family members, car seats and childcare.  Jeff mentioned his plan to take on childcare duties a couple of days a week when Theresa goes back to work.  Nicole’s children are now 3- and 5-years old.  The older one, a boy, will start kindergarten in the fall. 

Nicole, it turns out, has good rhythm and is a good dancer though she admits she will never be on Dancing With The Stars.  She loves chocolate cake.  She loves anything sweet or cheese.  I see some similarities here.

CSI episodes featuring crimes masked by chimerism were discussed.  Jeff said, “If I commit a crime and leave behind blood and sweat, your DNA and mine would be at the crime scene.”  This is fascinating stuff, Nicole agreed. 

Jeff promised to share our blog link (warned Nicole about his quirky sense of humor) and some links to articles about his kitchen work.  Finally, they were wrapping up.  Nicole and her husband (Oh!  we don’t know his name!) plan to get up at 4:30 a.m. tomorrow for two hours of training for a mountain bike race.

What a joy this chat was for Jeff and his blood sister!  Next time, Jeff will have to remember to use the speakerphone because his hands kept cramping up from clenching the cell phone.  Perhaps their next conversation will not be quite so long.

Her Name is Nicole!

I was startled from my nap by the phone.  A glance at the Caller ID had my sleepy head working overtime to work out why Penn Oncology was calling.  We’d already gotten Jeff’s last lab results and it was too early for the call to confirm his next appointment.  Had Jeff called the doctor to report a problem?  Well, I answered the call, of course.  It was Joanne.

Joanne!  Cool as a cucumber was my voice while my heart beat out the rhythm of a happy dance.  I chatted pleasantly as she asked how Jeff was doing and all the while I was thinking that there’s only one reason Joanne would call.

Joanne is the donor coordinator at Penn, the only one at Penn who is allowed to know the identity of Jeff’s donor, the one through whom we can correspond with Jeff’s donor.  And she possibly has the most fun job of any in oncology.  She didn’t keep me in suspense too long, though.  Jeff’s mystery woman had just signed consent to share her contact information.  I told Joanne I would try to reach Jeff by cell phone and have him call her. 

Jeff was working (yay!) and I called to give him the news.  He was deep into hanging a door - one hinge was mounted and he was screwing in the other.  He started describing what he was doing by way of explanation as to why he wouldn’t call Joanne at that precise moment.  He said he’d call later today or tomorrow morning.  “Are you kidding!”  I said. 

A half hour later Jeff called to say he was hands-free but he wanted to finish cleaning up the job site.  I offered to call Joanne to say Jeff would call within the hour.

Joanne was, in fact, about to call me back.  She said, “I know it’s o.k. with Jeff if I give you the information.”  She gave me the donor’s full name spelling each letter of her last name like a police officer calling in a perp’s license plate number, “T as in Thomas, R as in Robert…”  Her name is Nicole!  Cell phone number and email address followed - also spelled out with great care.  Joanne said, “I can tell you that the product didn’t come from very far away.” 

I said, “We are going to be grandparents next month” (I’ll tell anyone that!), “and Nicole made it possible for Jeff and I to experience that together.  We kind of like her.”  I was pretty blubbery by this time but Joanne enjoyed hearing our good news.  Joanne asked that we let her know when contact has been made.  I hung up the phone and texted Jeff his blood sister’s name - Nicole!  Then I paced the house.  And waited.

When Jeff got home he chuckled and said, “Did they pass that law?  I hope she doesn’t want to be paid!”  This, of course, on top of his contention that his donor is a prisoner and, therefore, is not permitted to make contact.  Jokes aside, he was happy with the news although not in a hurry to call or write.  A little shy, I think.  Eventually, he did shoot off a nice email message and signed it, “Your Blood Brother, Jeff.” 

When I added Nicole’s email address to our contact list - Poof! – her picture populated the photo field.  She’s beautiful.  Of course, I already knew that.