5th Birthday Bash

What do you say to a bone marrow donor?  Words cannot adequately express gratitude in this case.  Nicole once assured me that she knows what her gift of life means to us, without our having to express it. 

Our family and friends had an opportunity to meet Nicole and her family at a swim party hosted by my sister and brother-in-law, Judy and Mark, to celebrate the five-year anniversary of Jeff’s bone marrow transplant.  Each of our guests wanted to meet the celebrity of the day, Nicole, and to say “Thank you!”  She was gracious enough to hear this again and again and again.   

Here are a few pictures from the birthday bash.  Jeff and I were honored that old friends and new friends, customers, his family and mine, all came to celebrate with us. Doesn’t Jeff’s smile say it all?

Nicole and Jeff

Our Family and Nicole and Scott's

Rilling Family, Hosts Extraordinaire

The T-shirt Quilt Judy made for Jeff

Photo Credits BPK Photography

Mazel Tov, John Kasich, Your BUN looks good

A short man with a tray of asian chicken skewers asked Jeff if anyone had ever told him he looked like John Kasich.  The server assured him that he could run for office on that attribute alone.  Jeff snagged a skewer from the tray and the two shared a good laugh. 

It was a great party – the Gift of Life Gala at the Grand Hyatt, New York City.  Amidst some pretty incredible hors d'oeuvre stations, we met Mark, a 14-year survivor, now 21 years old, and asked him a few questions about long-term survival.  It seems he just rolls with whatever comes along, thyroid cancer most recently.  He related this with a wide, happy-to-be-alive smile and a little shrug. 

Jeff wore a Recipient ribbon that earned him many happy greetings.  While waiting at the corned beef and pastrami station, he was greeted by a man named Avraham, “Mazel Tov!”  Jeff, unsure of the correct reply, offered “Mazel Tov!” 

This was the largest gala to date – tables for ten were numbered into the 130s!  Many attendees may have been fans of the vivacious NY personality, Wendy Siegel, who was introduced by her lovely friend, Tovah Feldshuh (of Law & Order fame).  Wendy spoke emotionally about her cancer/transplant journey (primarily crediting her support system) before meeting her donor, Mordechai.  We could identify with her efforts to express her gratitude and, well, what can you say?  Marrow donors know well what gift they give. 

Gift of Life rolled out their new logo for this, their 25^th, year.  At dinner I sat beside Robin whose company, Brains on Fire, is responsible for the rebranding.  Although her organization serves non-profits and she must surely hear inspirational stories from many of her clients, Robin wept as each recipient met their donor.  Jeff, too, felt emotional, remembering meeting his beautiful donor, Nicole, at a Gift of Life event in 2013. 

Also at our table was Deena who met her donor at last year’s gala.  She and Jeff had a lot to talk about.  And Adam, who donated marrow 11 years ago, proudly shared pictures of his recipient’s high school graduation as if he was the big brother.  It was really nice to see that kind of attachment.  Adam’s parents, also at the table, have supported Gift of Life since hearing that Adam was a match.  After our disclosure that we are not Jewish, nor is Jeff’s donor, Adam’s father told us that although they are Ashkenazi Jews, Adam’s recipient is not Jewish.  He speculated that ethnic mixing during the holocaust carried down generations created the situation where Adam could help this boy. 

An update on Jeff’s last visit with the kidney specialist:  she says his BUN looks good (Blood Urea Nitrogen).  His creatinine also showed improvement.  His efforts to reduce his protein intake paid off.  Jeff told her he hadn’t eaten any beef since he last saw her.  She sucked in her breath and said, “I didn’t say never eat!  You must enjoy – sometimes!” 

Jeff reported eliminating nuts from his diet as well.  She said, “No nuts.  I don’t want you to eat nuts.”  Jeff had hoped to hear, “Nuts – you must enjoy sometimes.”  Oh, well. 

Symptoms persist - so, naturally, more tests and perhaps a biopsy in July.

No Peanut Butter?!

Granddaughter Rosie announced, out of the blue, “I don’t have Chapstick.”  And later, “I don’t have a remote.”  And, “I don’t have a cellphone.”  We caught on that her denials were, in fact, confessions.  Grandpop Jeff plays that game, too.  “I don’t have kidney problems…”

April “Doctor Month” ran into May with a visit to the kidney specialist, the sixth of the specialists visited.  Jeff has proteinuria, too much protein in his urine, which is causing his urine to be foamy.  Dr. Pathalapati told Jeff he wasn’t drinking nearly enough and that his kidney function was “bad, Stage Two.”  However, she also feels that drinking the prescribed amount of water every day (coffee and tea don’t count) could give much better lab results.  The plan is to do that for a week and test his blood again.  Also, an ultrasound and then, “We’ll see.”

Dr. Porter ordered a lot of lab work last week.  Among the many tests run was the Chimerism Analysis which shows, again, that Nicole’s marrow is making 100% of Jeff’s blood.  Amazing, fascinating, miraculous, wonderful!  Dr. Porter decided Jeff could drop the immunosuppressant (Mycophenolate) and check his blood again in six weeks to see if he can stay off of it.  He’s looking at liver function which is where there have been issues with GVHD.

A co-worker of mine told me that her husband, a rare triple organ recipient, was having auditory hallucinations from the same immunosuppressant that Jeff takes.  Sue’s husband actually went outside in the middle of the night to investigate the noises he was hearing.  Jeff has experienced this phenomenon, too, although he only went window-to-window in an attempt to find the source of the crashing and talking he heard.  Because of this and other side effects, it will be really nice if the GVHD stays quiet.

Dermatologist Dr. Samimi froze three more spots (one on Jeff’s face and two on his hand) and wants us to watch another on his forehead.  Jeff should return before six months if that spot changes.

Ophthalmologist Dr. Hirsch did not see enough change in Jeff’s cataracts to worry about it for now.  He told Jeff to return in a year.  Whew!

Jeff called me at work today with a report of his conversation with the kidney specialist.  Her warnings put him into a panic.  Oh, not because his kidneys aren’t in tip-top shape.  No, it was the peanut butter restriction (and also red meat and shellfish)!  After 30 years of peanut butter and jelly sandwiches – his workman’s lunch that keeps well in a lunchbox - he couldn’t imagine what he was going to eat.  I reminded him that there are a lot of foods he enjoys that are on the good-to-eat list.  We have some work to do.

Some more firsts:  ate yak meat and got our first senior discount at a department store.

Making Waves and Swabbing Students

Jeff’s hair is becoming unruly.

Five years ago this month Jeff and his hair parted company.  Several months later it grew in silky soft, thin and manageable.  Lately, however, his old wave has been giving him fits – right there in front, a sideways S, not the thickness of the old days but the shape just as it used to be, freakishly familiar to me.  And to Jeff, annoyingly uncooperative.

 A few explanations for the return of the wave have been tousled around:  going to bed with a wet head, the barber left too much length, he shaped it differently, a change of shampoo is in order.  None of this matters to me, though.  I am just tickled to see that at almost five years post-BMT Jeff still shows signs of recovery. 

This Saturday evening Daughter Kim, Jeff and I will participate in Rider University’s American Cancer Society Relay for Life.  We will attend the Survivor’s Dinner and take the Survivor and Caregiver Laps and then we will swab cheeks – hopefully, LOTS of them – for Gift of Life.  If you are so inclined, follow the Relay for Life link on the right and make a donation to our team, Bist Du Stark (Are You Strong?). 

ER Docs and Teladocs

Jeff spent some time in the ER.  It was the mock ER at the Please Touch Museum in Philadelphia.  Dr. Rosie listened to his gut with the stethoscope and then left her patient to attend to other things. 

Along came another health care professional (a six-year-old girl on a field trip from St. Dorothy’s) to take Jeff’s blood pressure.  The toy BP cuff didn’t fit around his upper arm so Jeff suggested she put it around his wrist.

“It says zero so it will have to come off,” she informed him.  She reached in her doctor’s bag and retrieved a pair of large plastic scissors.

He said, “That looks like it’s going to hurt.”

“It will only hurt when I snip,” she assured him.

Thank goodness for good medical care!  And for the best medicine - laughter!

When Jeff realized that he was going to have to go to the family doctor for a sinus infection, he was not too happy.  Combating “Doctor Fatigue” continues to be a challenge.  I remembered that Rider University now offers a Teladoc service as part of my health insurance plan and I suggested he call a doctor (at 9 p.m. on a Friday night) rather than trying to get a Saturday morning doctor’s appointment.  He was able to pick up his antibiotic at the pharmacy first thing Saturday morning without spending time waiting for an appointment and sitting in the doctor’s office.  Done.  Time for a nap.

To our list of firsts we can add a few food items:  ordering oatmeal out (fighting that high cholesterol), escargot (at Rat's, Grounds for Sculpture) and yucca (at a Peruvian restaurant).

A Big Snow, a Big Win and a TV Doctor

The Great Blizzard of 2016 left us with over a foot of snow, over two-foot drifts, and extreme gratitude for our snow blower!  After three hours of snow blowing on Day Two, Jeff took a nearly three-hour nap - his rest no doubt enhanced by the blessings our grateful neighbors sent his way:  the sign of the cross, the reverent bow, the “Thank You!” shouted over the roar of the machine.

We have added a couple of firsts to our LuAnn Cahn-inspired list.  On a romantic weekend getaway to Bethlehem, PA, we decided to actually go into the Casino and gamble!  We each decided how much money we would be willing to lose.  I was willing to lose just $1.  It makes me very sad to feel like I’ve been duped out of money - any amount.  Jeff was braver, willing to put up a fiver.  And we decided if we were at break-even, we would bet again but as soon as we were ahead, we’d stop. The machines required a minimum of five dollars to play.  I happily put my $1 back in my pocket.  Jeff played a slot machine (is it called a slot machine if you put in a $5 bill?).  The machine was so glitzy with pictures and messages that we had trouble figuring out how to play. I read the “Help” screen aloud but it was Greek to us.   A kind gentleman nearby pegged us for newbies and told us how to “win big” by betting $3 at a time instead of $1.  Jeff won his $5 back, “re-invested” it and won $402!  Done. 

Another first was to take Rosie and Penny by SEPTA Regional Rail to Philadelphia to have lunch with Aunt Kim.  Penny sat on Jeff’s lap by the window and watched the world go by.  Rosie stood on my legs for a better view and at each stop asked, “Going to see Aunt Kim?”  We counted the stops until we would see Aunt Kim, about 9 more, 8 more...  Aunt Kim met us at Jefferson Station and took us to a wonderful establishment, Burgerfi, where you can get the best hot dogs and burgers!  Rosie took in every detail of the restaurant, danced to the music and thoroughly enjoyed Aunt Kim’s company.  Aunt Kim thought the girls were pretty swell lunch dates, too. 

Last week Jeff told Dr. Porter that he’d caught a 1982 Quincy, M.E. episode in which cancer patients were being treated with gene therapy dispersed through the body by means of a virus.  Sound familiar?  1982 Art imitates 2016 Life.  Maybe you’d call it SciFi?  The problem was that non-patients were contracting that virus and it was deadly!    Dr. Porter was fascinated and took note of the episode number.  (Quincy, M.E. Season 8, Episode 7) 

Dr. Porter believes it may be possible for Jeff to stop the Cellcept (Mycophenolate) immunosuppressant after his April visit.  This is good news since GP Dr. Sullivan believes Cellcept may be contributing to Jeff’s recent high cholesterol, as it does for about 40% of patients who take it.  Dr. Sullivan wants to avoid medicating for high cholesterol because side effects include liver problems and Jeff has had GVHD of the liver.  In any case, he wouldn’t prescribe it without Dr. Porter’s approval. 

Unfortunately, instead of getting a list of foods to eat, Jeff came home with a list of Don’t-Eats.  He is quite forlorn.  He says all his favorites are on the list: marbled beef, ice cream, chocolate, soda…  I tried to focus his attention to an online list showing the foods to eat, including some of his favorites: nuts, apples, oatmeal, beans.   Dr. Sullivan also instructed Jeff to stop his vitamins for two weeks to see whether that takes care of the foamy urine.  All else is good. 

While at HUP, Jeff visited another MDS patient on Rhoades 7.  We’d been following Big Rich’s treatment and condition through his friend, my boss at Rider.  Rich is getting chemo while waiting for a bone marrow match.  Although Jeff had never met Big Rich before, they had a lot to talk about.  Jeff encouraged Rich’s wife, Joan, to take the train into the city and offered hope for a good outcome for Rich.  “Nice people,” Jeff told me. 

Plans are underway for a 5-year BMT Anniversary Party in June.  Nicole and her family will be able to come up from Atlanta for the occasion!