50 Spoons and Kinship with a Sea Turtle

First there was a spoon with a needle-eye on the handle for the stitcher, a spatula that resembled a paintbrush for the painter, syringe spoons for the nurses, a sand shovel spatula for the beach-lover, and now Swab Spoons for the Gift of Life staff members.  Jeff asked me how many spoons I thought he'd made so far.  That was easy to figure out because we started a list when it became difficult to remember which of his supporters he'd already gifted with a spoon.  We counted the names on the list.  With the seven he made for the folks at Gift of Life, there were 50 in all.  He likes to think that number 50 is the one for Jay Feinberg, founder of the Gift of Life Bone Marrow Foundation. 

With the Swab Spoons packed along with our sunscreen, we headed to the Philadelphia airport Thursday afternoon for our flight to Fort Lauderdale.  I95 was closed at Packer Avenue due to "debris on the road" according to a digital sign that warned us of a problem.  The "debris" turned out to be mangled rolls of sheet metal that had unrolled from the center like Chinese yo-yos and blocked the entire highway.  Fortunately, we had worked ample time into our schedule to allow for an extra hour of travel - or sit-still - time during which Jeff periodically quipped, "Don't they know I have an important speaking engagement?"

We traveled without further incident (we even got to keep our shoes on at the airport!) and arrived in Boca Raton on Thursday evening. Our room overlooked a plaza featuring a large, beautifully-lit Christmas tree. We went out to dinner with Tamara from Gift of Life and then turned in early.

Jeff awoke Friday morning relaxed and prepared.  We ate breakfast and strolled around the plaza.  Jeff practiced his speech a couple of times and we planned the rest of our weekend.  Finally it was time to walk to Brio Tuscan Grille for the Gift of Life holiday luncheon.
 
We met Barby with whom we'd had many email exchanges since September when she called to ask if Jeff would like to meet his donor in New Jersey.  Barby happily accepted the Swab Spoon he'd made for her and put the two extra spoons on the raffle table.  We met more staff members as they arrived and we had our caricatures drawn.  Gregg kicked off the festivities by thanking all the staff members in a humorous overview of their jobs.  This turned out to be pretty useful to us in learning a little of what is involved in recruiting donors and performing matchmaking.  Gift of Life has an office environment unlike many, I think.  Hugs and compassion are the norm and staff members know and appreciate the significance of their work for the patients and families they impact.

Jeff's speech was well received.  He talked about Nicole's inspiration for becoming a donor, her little cousin, Nicholas.  He talked about the life events and moments he has enjoyed since his bone marrow transplant: Kerry and Theresa’s wedding, cooking for Kim on her weekly school night, seeing Keith become a Marine, helping me see my parents through their end-of-life journeys and, of course, the birth of our granddaughter, Rosemary.  Jeff said, “Before, during and after these events and moments – and many more – I think of Nicole and what she did for me.”  He told the staff that he thinks about all the hands involved in his survival, including all of theirs.  He thanked them all for their generous Gift of Life.
 
Later Jeff reflected on his performance and thought he only missed one little piece - about how he and I complement each other.  At one point pre-transplant, Jeff had concerns that his transplant was delayed, not because his donor was sick but because she was chickening out.  I soothed him at the time by assuring him that his donor had probably been screened for the likelihood of her reneging. It turns out that Gift of Life asks potential donors 16 questions to be rated on a scale of 1-5 including,"How likely are you to donate stem cells," "...bone marrow?"  Of course they're looking for 5's.  Nicole probably answered 10! Thank God!

How to spend an evening after such a success?  Shopping!  Jeff had been reluctant to replace his shoes that no longer work for his neuropathetic feet because he needed to replace all of his shoes.  However, he so dreaded donning his black dress shoes for the upcoming Claus-Snyder wedding that he was willing to get new ones.  I tried to persuade him to fork over a bit more than usual in order to get what he needs - shoes that don't hurt.  I found a couple of pairs of Italian shoes at Nordstrom's that were soooo soft and very nice and would have been perfect if they were discounted by about 75%.  Fortunately, we found good, old-fashioned service at Clark's.  The salesman understood about neuropathy.  We got "dancing" shoes and walking shoes to replace the sneakers we bought hastily at the time of his transplant (he needed new, clean sneaks for his allo-cleaned room at the hospital).  Although he'd complained about those now-two-and-a-half-year-old shoes every time he put them on, he had trouble leaving them at the store to be trashed!  With a little encouragement from the salesman, Jeff surrendered.

We spent a great weekend touring Morikami Gardens and the Flagley Museum, walking the beach and enjoying great restaurants.  Sunday afternoon we headed to the airport believing we'd be home before the snow storm.  No plane arrived at the gate, though, and finally the flight was canceled.  With our two cell phones going simultaneously, we were able to book a room near the airport and wait on hold for an eternity with the airline.  No flights tomorrow, we were told.

A full day extra in Florida!  With our gift of an extra day, we visited the Gift of Life offices.  Gregg was kind enough to show us around despite the short notice.  The offices are beautiful, recently expanded to accommodate their growing organization.  Everyone was very nice to us and we repeated our thanks for their good work.

We walked along the ocean in Delray Beach and visited the Gumbo Limbo Nature Center where we saw butterflies, watched the fish in the education tanks get fed and visited the sea turtle rehab area.  As we entered the rehab center, Jeff stepped quickly to the last turtle along the row of hospital tanks.  I looked to see what had drawn his attention so quickly.  The turtle was hooked up to an IV.  Jeff was fascinated by this and wondered whether it was the "same stuff" he'd had at home post-transplant - IV fluids.  It turned out the turtle was receiving antibiotics for a lung infection.  As we left the rehab center, Jeff remarked with satisfaction, "It was certainly worth going in there."  He felt a kinship with the sick sea turtle!

More walking - along Fort Lauderdale's Las Olas Boulevard- made Jeff's feet hurt.  He wasn’t wearing his nifty new walking shoes (grr!).  The forecast threatened more snow for Philadelphia so we noted which restaurants we liked in case we were given another day in Florida.  Back at the hotel, we packed for an early morning flight and wondered whether the next snowstorm would hinder our return to Philadelphia.  It didn’t.  

Many, many thanks to Gift of Life for their hospitality and, of course, for what they do every day.  What a great bunch of people!

Early Thanksgiving - Minus One More Pill!

Our pre-oncology-visit anxiety this month was shorter in duration but more intense than usual.  Jeff and I both had a terrible night of sleep on the eve of the visit -Thursday night.  Jeff had been to the family doctor last week and his labs showed his liver counts were off.  When Dr. Peck called to report the issue, Jeff told him, “No kidding.  That’s the GVHD I’ve been dealing with since about six months after transplant.”  I was nervous that Dr. Porter would not continue the Cellcept taper or, worse, that he would want to add back one pill.  Jeff couldn’t say exactly what he was worried about.  His was a more general anxiety.

Friday morning, with a few last minutes instructions about Rosie’s care to the substitute caregiver - me, off he went to the city with iPad in hand.  Dr. Porter’s staff had asked to see pictures of Nicole and Jeff’s meeting at the Gift of Life walk and Jeff was looking forward to sharing them.  He had a good bit of time to kill before his appointment so he had breakfast across the street from the hospital at Potbelly Sandwich Shop then texted me to make sure Rosie was on schedule for her morning feeding and nap.  He seemed a little put out that I got to give her cereal for breakfast since he hadn’t yet had the pleasure.  He’ll have plenty of opportunities now that she is starting solid foods. 

Jeff texted later that he’d met the new oncology fellow, Scott, and was very impressed with him.  A rare pants-off exam was in order.  Scott said, “Oh, sure!  Wait for the new guy…”  

Jeff told Scott, “Before we get intimate, let me show you pictures of my family and donor.”

It sounds like Jeff and Scott will get along well for the next two years.  Scott knows Dr. Allison Rager, the former fellow, now in Pittsburgh.  Jeff hopes he’ll continue to get news of Allison through Scott.

Thankfully, Jeff’s liver counts were good.  The taper will continue!  Jeff’s blood pressure and weight were good, too.  Dr. Porter wants another pulmonary function test before the January visit.  Jeff remembered that his one-year lung function test showed better results than before transplant so there are no worries about that!

 

The return train ride is often the start of a good long nap on doctor-day.  Instead of joining me at Rosie’s house, Jeff headed home for a snooze.  He wanted to rest up for his niece’s senior art show in the neighborhood of her school, Temple’s Tyler School of Art.  So the evening brought Jeff’s second trip to Philadelphia in one day, this time by car.  We met Kim at the show, saw Jeff’s brother’s family and, of course, the fruits of Elizabeth’s labor.  A fun evening.

During prayers at church today, I offered a prayer of Thanksgiving for Jeff’s good counts and his upcoming speaking engagement in Florida.  Pastor Wiseman commented that Jeff will be so practiced at public speaking that he will return, able to preach.  Jeff replied, “I could do it now if I only have to talk about myself.”  Chuckles from all.

Jeff has declared an early Thanksgiving for all our blessings.  We spent last weekend with my sibs and their spouses at Mark’s uncle’s mountain house.  This weekend Jeff, his brothers, and Cousin Richard visited Aunt Kate in Norristown and feasted on Zeps at Eve’s.  Thanksgiving weekend will be spent with family and friends.  Life is good. 

Dreams of Glory, Wedded Bliss and Stink

The big news around here is that Gift of Life has invited Jeff to speak at their holiday party in December at their Florida headquarters!  He has been thinking about adjustments to the speech he prepared for The Big Meet with Nicole.  He has some good ideas going.  Those thoughts, evidently, have seeped into his sleeping hours.
 
In Jeff’s dream last night, his audience was much larger than what Gregg and Barby from Gift of Life told him to expect.  There were lots and lots of people including some families with children.  The stage at the dream-venue was built out of materials from the venue’s kitchen renovations.  Jeff began addressing the large crowd.  When he took a step back, the weak floor gave way and the vases of flowers that decorated the back of the stage crashed down.  The speech was interrupted while clean-up took place.  Some of the families left at that point.  It was getting late.  The speech resumed and the audience was enthralled!  They began to applaud - the speech was just that great!  Then a storm came up.  The windows could not be closed because they were electric and the power had gone off.  Rain poured in! The windows were finally closed but more people had left.  He continued speaking again and then… he woke up.  Phew!

Jeff was diagnosed three years ago, just a couple of weeks before Oktoberfest.  The annual Oktoberfest serves as a marker of time as well as providing the name for our fundraising teams, Bist du Stark?  Are you Strong?

To compete in the Strong Man competition, you hold a full pitcher straight out in front of you for as long as you can.  In order to prevent beer being spilled, the pitcher holds lead shot to approximate the weight of a pitcher of beer.  When you can no longer hold the pitcher aloft, your arm drops, it hits a wooden bar which then swings to indicate you’re finished and your time is called.  In 2010, just days before starting treatment, Jeff placed second in the Strong Man competition with a time of 3:45.  In 2011, Jeff had issues with his right shoulder due to the full-body irradiation he received as part of his pre-transplant conditioning.  His left-handed Bist du Stark effort was only 1:43.  Still, he gave it his best try.  In 2012, Jeff declined to participate in the Strong Man, Bist du Stark, competition, accepting his limitations easily.  This year, Jeff declined to participate in the Strong Man competition because, he said, “What is the point if I can’t win?”  He did not accept his limitations so easily.

On Sunday, we celebrated 34 years of wedded bliss with a hike at Pennypack Wilderness.  It was an overcast, windy fall day not unlike the day we were married.  We had linner (late lunch, early dinner) at Pipersville Inn and, by chance, were seated at the table right next to my cousin Dawn and her husband, Clarke, and Clarke’s family.  They’d lost their daughter to leukemia when she was a young woman – too young.  They were pleased to see Jeff looking so well – and facing a platter piled high with gooey ribs.  While enjoying our meal, I noticed that the hike had worn Jeff out.  I accused him of planning to nap when we got home.  He replied quickly, “I might not wait that long.”  Just as we finished our meal, Keith called from Afghanistan where it was already Veteran’s Day.  It was the first call we’d had in three weeks.  It was good to hear from him. 

Some stomach issues have been giving Jeff a little trouble for a couple of weeks.  Something to report to Dr. Porter next week. 

In other news, Giblet got skunked this morning.  I bathed her with the Skunk-Away neutralizer we had the foresight to buy when Emily and Matt’s dog was skunked.  Jeff spent the day scrubbing and airing out the bathroom where I'd bathed the stinker and otherwise dealing with the stench that wafted throughout the house.  He did such a good job that by the time I got home from work, the smell of the fresh bread he’d made was more prominent than Eau de Skunk.  Another treatment of Skunk-Away - or two or three – ought to finish the job.   

Gift of Life Press

Check out Gift of Life's November newsletter.  You will see a couple of familiar faces!

http://www.giftoflife.org/Public/News.aspx
Scroll down a little to "Coming Together to Fight Blood Cancers."

Gifts, Treasures and Light the Night

Monday was an exciting day at our house.  In fact, it was so exciting that Jeff ran over to Kerry and Theresa’s house at 7:30 a.m., collected Rosie and brought her to our house to watch the goings on!  We had our two big oak trees removed!  One was diseased and the other, although healthy, was heavy with branches to one side.  Jeff was concerned it would cause damage to our house or a neighbor’s house if a superstorm toppled it.  It was sad to see them go since it will severely change the way we use our back yard.  We will replant – a willow oak or tulip poplar or something.

Back to the exciting part:  One worker was lifted high into the tree on the ball of a crane and then spent the day in the tree, coming down only for lunch. There were loud trucks and loud men, enormous chainsaws, sawdust.  I had warned Jeff that he wouldn’t be able to keep Rosie at our house with all that noise!  Boy, was I wrong!  Jeff and Rosie watched from the back porch, in a lawn chair at the back of the garage, from the dining room.  They went for walks so they could see it from vantage points all around the block.  I should have guessed that Rosie, the daughter of two engineers, would be right there with Jeff, enjoying the hub-bub.  Jeff sent a picture of Rosie to me at work with the caption, "Watching the Tree Men.  It's a nail-biter!"

One day last week Jeff called me at work.  He had just arrived home and noticed there was a delivery – a box from Gift of Life.  He put the phone down to open the carton, then picked up the phone and said, “There’s another box.  Wait a minute.”  I heard sounds of packaging material rustling.  Finally Jeff said, “It’s a crystal, a trophy.”

I teased, “Well, it was worth having a transplant if you get a trophy!”  It has both Nicole’s and Jeff’s names, the date they met and “Partners for Life.”  Nicole also has one.  It is a beautiful commemorative piece.   

We have had some very nice email messages from the staff at Gift of Life and family and friends who supported our teams for both the Gift of Life and the upcoming Light the Night event.  It seems most nights we have a few emails to write, thank you messages mostly.  And so we are still riding the high from meeting Nicole. 

It seems as if we will have a continued relationship with Gift of Life and we are happy to help them promote the value of swabbing.  Our Light the Night coordinator has plans for Jeff as well.  Stay tuned for news of future public speaking engagements.  

Lately, when answering the question, “How was meeting Jeff’s donor?” I have managed to make people cry.  We have shared the children’s book we wrote for Nicole’s children – that makes people cry.  Several people told me that our last blog entry, “The Big Meet,” made them cry (and I worried it was too bland).  It takes me a little by surprise when others cry while I do not (that’s new!).  On occasion, a tear escapes but not so much that I can’t continue to talk.  I don’t mean to wring tears out of the people around me but I realized that I am grateful for their emotion.  It reminds me that the link between Jeff and Nicole is not an everyday, commonplace thing.  It is a treasure, a gift. 

There is still time to support our Light the Night Team.  Use the link on the right, if you are so inclined.

Gift of Life – The Big Meet

On the eve of The Big Meet we enjoyed a nice dinner in Paramus with Gift of Life staff members, Gregg and Tamara.  We had an opportunity to ask questions about the process from their perspective and to tell about Jeff’s diagnosis, treatment, transplant and our exchange of letters with Nicole.  We talked about the many people who had a hand in the matchmaking:  from Nicole’s swabbing at an event to the lab technicians who processed her sample and those who identified her as Jeff’s match, the Gift of Life staff members who tracked down Nicole’s aunt and eventually Nicole, the medical staff who collected her marrow, the volunteer who took the marrow from New York to Philadelphia, etc.  Jeff figures thousands of hands had something to do with his recovery.  You have to feel a little jealous of people like Gregg and Tamara who get to work daily toward such happy outcomes.  Anyway - good food, good company.

We woke up early on the big day.  Jeff was nervous about speaking in front of a crowd although he was well prepared.  We were both a little giddy as we waited to head over to Van Saun Park.  I confess that I found myself pacing the hotel room aimlessly.

The Big Meet did not disappoint although there was one minor glitch.  Nicole did a beautiful job on stage talking about her experience but instead of Jeff telling his story, his time on stage was spent standing by while someone else related his tale.  It’s all good.  It probably saved us all from getting too blubbery as we most certainly would have if he’d delivered his heartfelt message to Nicole in front of the microphone.  Instead, he delivered his speech after the walk to a small crowd including Nicole, a few family members and myself.  (There were tears.)  Later Ruth, a Gift of Life staffer, told Jeff there would be no problem checking “public speaking” off his bucket list.  She will see to that! 

Jeff and Nicole led the walk, Nicole’s husband, Scott, and I followed.  Our team of twelve family members walked and ran by us. Our team members were able to spend some time after the walk/run getting to know Nicole and Scott.  We felt immediately as though they were extended family to us.  Lots of laughter, plenty of hugs, good conversation… a joyful occasion.

There is no gift we could have bought for Nicole to appropriately commemorate the occasion.  We’d decided hand-crafted gifts were the way to go.  Jeff, of course, made a spoon and spatula for Nicole.  And we presented her with a children’s book that we began writing for her children around the time we learned her identity in May.  It is based on the transplant experience and is called The Butterfly and the Carpenter Bee.  You can probably guess which one is Nicole and which one is Jeff. 

The Mel Cohen Memorial 5K for Gift of Life was a great celebration for bone marrow donors and recipients!  It was wonderful to talk to other recipients, hear their stories, celebrate their survival and to hear about their meetings with their donors.  We had the pleasure of meeting Jay Feinberg, founder of Gift of Life.  He is a soft-spoken, gracious man.  It was an honor to meet him and thank him for his part in Jeff and Nicole’s story.  

We also met a few donors and caregivers.  Mel Cohen’s wife, Sandy, told us Gift of Life and Mel’s donor gave her four more years with Mel.  She is grateful for those bonus years.  This event, in Mel’s memory, is a successful fundraiser for Gift of Life, the top team raising an incredible $20,000 for the organization.  All of the proceeds will cover processing costs associated with swabbing.  (Thank you, team members Becky, Sam and Kerry for swabbing!)

We had lunch with Nicole, Scott, Kerry and Kim and spent the rest of the day, into the evening and the following morning talking and talking and talking.   Nicole and Scott were polite enough to watch a slideshow of our un-edited Bermuda photos as well as several shots of little Rosie.  (Theresa and Rosie were not able to share the occasion due to a medical emergency in Theresa’s family.  They could use your prayers.)  

Jeff and I thank all of you for your love, prayers and support on this momentous occasion. 

T Minus 2 days!

The “Big Meet,” as Nicole calls it, is only two days away!  Marti from Gift of Life called to tell us what to expect on the big day: two separate tents for Jeff and Nicole with staff members on duty to keep our two “stars” apart until the proper moment, the order of those called to the stage (Jeff then Nicole), the music (including the Maccabeats, the a cappella group from Yashiva University whose YouTube video campaign on behalf of Gift of Life is legendary!), the refreshments (I’m thinking of Pop, “Will there be refreshments?”  Of course!), who we may meet (Jay Feinberg, the founder of Gift of Life, and members of Mel Cohen’s family for whom the event is named).

Dog care is covered - thanks Kerry, Theresa and Emily.  Bags are not yet packed although I have already set aside my waterproof mascara.  Weather should be decent.  That’s good.  We have given some thought to what we might do with Nicole and Scott on Monday (hiking, maybe?).

We have a team of about ten people and have had to adjust our team fundraising goal twice!  Thanks to Kim’s friends for our most recent contributions and to all who are supporting us.  It’s not too late if you haven’t.  Use the Gift of Life button on the sidebar and choose “Support Bist du Stark? (Are You Strong?)” under Jeff’s picture.  

We are so pleased to help Gift of Life work towards their vision,

“a match, anytime, anywhere, for anyone.”

And, of course, we can't wait to meet Nicole!  We’ll post pictures - stay tuned!

One Less Pill and One New List

As Jeff dressed early this morning, I assured him that his Bermuda tan had faded to a respectable shade for his appointment with Dr. Porter.  He’d been worried about that.  I got up early, too - for second string Rosie-duty while Jeff went to Penn.  He gave me many instructions for Rosie’s care and seemed a little worried whether I was up to the job.  Isn’t that cute? 

Well, poor little Rosie is sick and, in fact, I did have a little trouble giving her a bottle. She cried a lot, poor thing.  When she fell asleep, I placed her in her crib, as instructed by her mother, so she would be near the vaporizer.  Phew!  I thought, “It must be 11 o’clock by now!  That was hard work!”  I wanted to take notice of the time so I would know how long she napped.  It was 8:36 a.m.!  I’d been on duty for only about an hour!

While Rosie slept, I had a text from Jeff: “14.4 Hemoglobin.” 

I texted back, “What?!  That’s fantastic!”  That’s actually in the standard range!

“Rosie ok?”

I replied, “Rough time with the bottle.  Sleeping now.”

Jeff offered expert tips and asked how Rosie slept last night.

When I replied, I managed to get my phone’s keypad stuck on caps-lock: “T SAID COUGHING DID NOT DISTURB HER SLEEP.  SORRY for shouting.”

His text reply: “You should whisper if Rosie is sleeping.”

He texted a few more times from Dr. Porter’s office, once to get the name of the 5K race in Paramus where he’ll meet his donor - The Mel Cohen Memorial 5K for Gift of Life.  He said Dr. Porter wants pictures.  When he told Nurse Heather about the plans to meet Nicole, she said, “You always have a story that gives me goose bumps or makes me cry!  We don’t often hear such good news in this office.”

Dr. Porter gave Jeff the results of his last chimerism test:  still 100% Nicole’s blood cells!  The liver function tests that were done in July showed normal results.  Dr. Porter thinks that Jeff may always have to take immuno-suppressants but the dosage can be dropped back to three pills a day.  Yippee!  One fewer pill in the aresenal!  They discussed whether to drop an a.m. or p.m. pill to avoid the occasional nausea Jeff gets from the Mycophenolate.  

Dr. Porter and Nurse Heather both said Jeff looked great. Maybe that Bermuda tan was exactly the right shade!  Dr. Porter recommended a great hamburger joint at the Paramus Mall.  We’ll have to check that out when we’re there.  Jeff teased Dr. Porter, "You and your team made me live so long that I now need to make a new bucket list!"

Kirsten, our L&LS coordinator for our Light the Night event, also asked for pictures of the Gift of Life “meet.”  We may have to ask family members to take pictures for us in order to get some decent ones.  After all, we’ll be involved in hugging Nicole at the crucial photo op moment.

A New Bucket List

We have just returned from a bucket list trip to Bermuda.  When we made our reservations, Jeff said, “We’re going to need a new bucket list!” 

At a lovely resort hotel, we tried – and failed – to take up residence on a chaise lounge.  We have never done vacation that way.  Besides, if Jeff sits, he sleeps, and he did not plan on sleeping his vacation away.  There was a lot to see and do and he was up for everything: a lighthouse, forts, beaches, ferry rides, restaurants, museums, gardens, snorkeling, cave tours, massage in a cave spa and – best of all – cave swimming which we enjoyed numerous times.  The cave entrance was conveniently located close to our room.

 Everyone was friendly and seemed genuinely happy to be there – locals and tourists alike.  Jeff ordered fish at every meal and said, “Theresa would be proud of me – no beef all week!”  The manager of the restaurant we visited most often, The Swizzle Inn, said we were their “fish ambassadors.”  The restaurant’s slogan is “Swizzle Inn, Swagger Out,” which I thought was “Stagger Out.”  We did neither but we did enjoy their signature drink, the Rum Swizzle.

On our last morning on the island, we woke up early enough to watch the sunrise.  Jeff took awesome pictures with our new point-and-shoot camera.   

The lawn needed to be mowed when we returned, of course, and the lawn mower was finicky.  Jeff had to work on it and coax it to start.  He remembered that the first lawn mower we bought 32 years ago lasted only five years or so and this is the second one we’ve ever had.  Again, I expressed my belief that it is time for a new mower but Jeff is not ready to concede to the mower and me.  Jeff also remembered that last summer he was not able to pull the cord to start the mower.  He might be taking too much pleasure in tinkering with it.

We're glad to be home to family but what a great trip!