Our First Gift of Lift Drive Yields a Match!

We got the most exciting news from Gift of Life today by email:

“Dear Gift of Life Volunteer,
On Jun 14, 2014 you helped facilitate a donor drive in Hamilton at NJ YMCA Staff Training Day Drive. We are thrilled to inform you that a donor recruited at that drive has been identified as a match for a 65 year old woman battling Acute Myelogenous Leukemia.” 

Jeff remembers giving a rousing short speech to the crowd and then walking around with Rosie in his arms, telling his story to the young camp counselors and encouraging them to swab their cheeks.  Theresa helped us that day along with Donor Frank and Gift of Life Staffer, Nick.  More about that day:

http://jeffs-journey.blogspot.com/2014_06_01_archive.html 

Jeff is proud that we had a success only one year after our very first drive and I'm shedding a few tears whenever I think about the families who are preparing for donation and transplant.  We're thinking, of course, about Nicole, too.  We're feeling blessed to be a part of the Gift of Life process.

Role Reversals

In nearly 36 years of marriage I have relied on my even-keeled husband on many occasions.  He remains calm under almost any circumstance (even when faced with disease, as we have seen).  While scatterbrained Amy flits about trying to solve a problem - finding a lost item, for example – Jeff’s logical brain goes to work towards a quick and painless solution.  I have Jeff’s Chemo Brain to thank for my becoming the saner, more rational partner.  Case in point: 

I was paying bills at the dining room table when Jeff asked me to submit an online rebate. He read the pertinent numbers off of a Home Depot sales receipt and said that he had another rebate to submit but he couldn’t find the receipt.  I went back to paying bills and figured he’d bring the other receipt when he got it out of his truck or wherever he had left it.

Head bent to my task, I became aware that Jeff was walking around and around and around the house.  Eventually he began to grumble, “Where could it be?” and “What did I do with it?” and “Darn it!”  I sensed he needed help and asked what was missing.

“The receipt!” he growled.  “It was with another rebate form and a drill bit!  I don’t know what I did with them.” 

My did-you-look suggestions were answered with frustrated responses, all “Yes” or “Yes, twice!”  There was nothing to do but leave the bills and join the search.

Tracing his likely steps for the day, including spots little Rosie might have secreted away the papers and drill bit, were fruitless.  We spent much too long in the effort – the garage, the bedroom, the shop, the bathrooms, the kitchen, Rosie’s play kitchen, the back porch, every surface in every room.  Nothing.  We gave up and decided a nice walk might help ease the loss and restore sanity.  

One step out the front door and I noticed a white cylinder of wind-wisped paper in the driveway.  “What’s that?” I asked.

Jeff marched across the driveway and caught the thing.  “It’s the receipt!”

He stared at it as if the thing had, of its own volition, got up from the kitchen table and slipped out the front door.  And then truth and clarity arrived.  “I left it on the roof of the car.”

Now, everyone, including Jeff, knows that the roof of the car is not a very good place to perch things, even temporarily.  So this, too, was out of character for him.  He remembered needing both hands to extract Rosie from her car seat and, well…

I glanced up and down the street and saw another piece of paper in front of our neighbor’s house.  I went to investigate.  The rebate form!  Our calming walk became a Drill Bit Hunt.  We retraced the path of the car around the corner, down Mercer Avenue to Bridge Street.  We walked awhile down Bridge Street and then back home.  We found two paint stirrers which Jeff now remembered were among the missing items but no drill bit.

“The rebates will pay for the cost of the lost drill bit,” Jeff rationalized.

I watched Jeff relax – finally.  “I think we’ve had a role reversal,” I said, feeling pleased that I did not allow his panic to take me along.  We had a good laugh and that was that.

Jeff saw Dr. Porter last week and had good numbers, including immunoglobulins, again!  Dr. Porter asked Jeff if he is able to work.  Jeff was surprised by the question and didn’t remember Dr. Porter asking it since maybe the first year post-transplant.  When Jeff related this conversation to me I said, “Why didn’t he ask you that back when they cut off your Social Security disability?”  At that time he was not working as regularly as he is able to work now. 

Of course, we are glad Jeff is working and, more importantly, that he is feeling very well.  In quiet moments Dr. Porter’s question rattles around in my head and disconcerts me.  Why, after four years of steady improvement, has he asked this question?  Can’t he tell from the four panels of blood work that are done every two or three months that all is well?  Nothing looks - at least to my untrained eye – as if it is trending too high or too low.  Then I convince myself that it was a benign question and is not any kind of omen.  Geez!  Maybe Jeff is the saner one of us after all.

Find Your Gift and Give It Away

While watching the news one day in the 1990s I saw a woman making a plea for bone marrow donors so that her son could live.  I had young children at the time and I remember being impressed by her gumption and also afraid that her efforts would not be enough to save her son.  The news anchor moved on to another story but I continued to think about Arlene Feinberg and her son, Jay.  Of course, I didn’t know then that she would eventually save her son - and my husband, Jeff, too.

Our relationship with Gift of Life Bone Marrow Foundation began two years ago when Jeff’s donor, Nicole, told us that she had swabbed and then donated marrow through Gift of Life.  Since then we have met several staff members (many with personal reasons for their involvement with Gift of Life) and a few donors and recipients.  We’d heard the Partners for Life Gala described as an emotional event, attended by many donors (of both varieties: marrow and money) and recipients and so we gladly accepted the invitation to this year’s event.

A Nicole Sandwich

The gala was held in New York City at the beautiful Grand Hyatt.  After stopping at the check-in table where we saw familiar faces, Anita and Marti, we turned toward the entrance to the banquet room.  There, on an easel by the door, was the beautiful picture of Jeff and Nicole taken the day they met at the New Jersey Walk for Life.  Beneath the picture was a Picasso quote, “The meaning of life is to find your gift.  The purpose of life is to give it away.”  I told Jeff to stand next to the picture and make a Nicole Sandwich.  I snapped a shot and sent it to Nicole by text message, “Wish you were here.”  Later, staffers Alec and Greg mentioned that this larger-than-life image of Nicole and Jeff greet them every day when they arrive at the office in Boca Raton.  

The bone marrow donors and recipients wore name tags which facilitated our asking about their experiences.  One woman attended the gala with her mother despite a sad outcome for her recipient, a child.  I asked the mother how the donation process was from her perspective.  Like Nicole’s mother, she was worried about her daughter (her only child) but supported her throughout.   

Fun and fabulous hors d’oeuvres were served and we found ourselves seated with the emcee’s mother.  Along came her son who greeted his mother warmly.  She handed me her cell phone and asked me if I would take their picture.  As I framed the shot I heard someone at my ear, “After you…”  It was one of the photographers covering the event and I felt a little silly standing between him and the shot he would take.  I finished, stepped aside to let him get his shot and returned the cell phone to its owner.  I thought of my coworkers - Survivor fans - would have taken advantage of the opportunity to have a picture taken with Ethan Zohn, the winner of Survivor: Africa (and himself a stem cell transplant recipient).  His mother proudly told us that he used his Survivor winnings to start a charity, Grassroot Soccer, to educate kids about AIDS.  Nice!

We shared a dinner table with a brother and sister (a recipient) who are emotionally close but, the caring brother reported, not geographically close enough for the ordeal of bone marrow transplantation.  We watched as three more donor/recipient pairs met for the first time.  I marveled that the gift can be given by an adult to a child, a young man to a 50-something woman. Oh, the power of that magic juice, the right DNA!

I joined the line of spectators as the donor/recipient group photo was being organized.  I learned about a man in the group who was first a donor, then a recipient!  I watched Eve, an 11-year-old Scottish girl, become antsy as the photographers staged the photo.  The poor thing was still on Scotland time but with encouragement from her donor Mickey, who she’d only just met, she managed to stick around long enough to be included in the picture.

Jeff was feeling the lack of a yarmulke but I pointed out there was a man in a kilt and another wearing sneakers with his suit (proof that when you have treatment-related neuropathy you go with comfort over fashion - although Jeff is a hard sell on this point).  Jeff is just one of many people saved by the determination and persistence of Arlene and Jay Feinberg and Gift of Life – yarmulke or no.  Jay marked his 20 years’ survival with a quip, “Ethan, I’ve done a lot of things to survive.. but I would never eat bugs.”

The gala to me was a room full of grateful people - not just the recipients but also donors who have had a rare opportunity to save someone’s life and the honorees whose work on behalf of Gift of Life is a response to their gratitude to the organization.  Tissues provided at every table were put to good use – at least at ours!

Happy Birthdays! Happy Birth!

Happy 4^th Birthday to Jeff!  And welcome Baby Penelope!

  

It is hard to believe that it has been four years since Jeff’s bone marrow transplant.  May is a big birthday month for us.  Besides Jeff's 4th "birthday," two of our three children have May birthdays and we have just welcomed our second grandchild into the family!  Baby Penny and Big Sister Rosie both have May birthdays, too.

Blessings abound!

Walk, Don't Run and Mohs a No-Go for Baby Face Jeff

April has been a busy month for our cancer-fighting activities.  We participated in spring events for Be the Match, Gilda’s Club and the MDS Foundation in addition to the Gift of Life swab station at the fencing tournament.

 

We were members of Team Penn for the Be the Match 5K Walk/Run (we walked) at the Philadelphia Navy Yard.  Dr. Porter, Nurse Heather and other Penn staff members walked/ran with their families and it was fun to see them outside of the office for once.  Jeff’s skin cancer treatment had finished a week prior and his “chemical peel” left him looking very young and healthy.  I snapped a picture of Nurse Heather with “Baby Face.”  It reminds me of the 18-year-old Jeff I fell in love with (be still my heart!).  

Our Gilda's Club blood networking group, usually attended by 6 people, had a whopping 15 people this month (including two nurses on their oncology rotation).  I tell our new members, "Welcome to the Club.  I'm sorry you're a member."  Jeff teased our fill-in facilitator, Beth, to take credit for the group’s popularity and to warn Marianne, our regular facilitator, not to let the group go to pot when she returns to us.

As usual there was a fair amount of laughter but it was difficult to see the newbies’ – as Member Monique puts it – “deer in headlights” reaction to finding themselves members of this exclusive club.  One new member is a fan of homeopathic medicine and is crushed that she needs toxic treatments to survive.  I hope we were reassuring and hopeful but also truthful about the sucky parts.  For example, Steve, cancer-free at two months post CART19 treatment, relapsed (NHL) at six months.  He participated in the clinical trial phase which was intended to determine appropriate dosages and, evidently, several participants relapsed.  So, not enough maybe.  Also, Michael shared the sad news that he’d lost a friend last week to Multiple Myeloma, the same disease that he is managing.

We attended a luncheon for MDS families in Philadelphia where we met a couple, Maureen and Phil, who expressed their attitudes about Phil’s MDS diagnosis similarly to the way Jeff and I did initially – Maureen carries the burden of the anxiety and Phil shrugs it off.  Maureen arrived at the luncheon with stress lines on her face and left looking relieved and feeling grateful to have met a survivor like Jeff.  She repeatedly remarked, “Just look at him!”  By now Jeff’s skin is looking baby-soft and smooth so that he makes an excellent poster boy for bone marrow transplantation and survivorship.

When Jeff was about half way through his Fluorouracil topical chemotherapy, Dr. Samimi had him schedule Mohs surgery for the spot she’d biopsied and found Squamous Cell Carcinoma.  The surgery was scheduled for today.  Nurse Katey took pictures and explained the procedure.  She told us a lot of patients do not follow the instructions for the topical chemo and do not get good results but she could see that Jeff had obviously done a good job.  Dr. Sobanko agreed that the area was not remarkable. “I see only the biopsy scar,” he said.

We’d prepared for a long day of scrape and scan/wait for the lab, scrape and scan/wait.  Instead, another biopsy was performed and we waited for the lab to process the sample.  Eventually, the lab confirmed that the topical treatment had taken care of the cancer!  The area – in fact, all of his skin - will have to be monitored and Jeff happily agreed to make and keep his dermatology appointments every six months (or sooner if Jeff notices a change).  Penn’s dermatology department is part of the bone marrow transplant team.  They dedicate one day each month solely to bone marrow transplant patients.  It is a relief to know they see lots of patients like Jeff and can catch these things early.  Of course, part of the credit goes to Baby Face himself who did as he was told!

En Garde!

Jeff is sandwiched by two donors: Nick Hudson, Gift of Life, and fencing coach Marshal Davis, Swarthmore College.

Jeff and I were happy to man the Gift of Life swab station at the National Collegiate Fencing Tournament hosted by the Swarthmore College fencing team (Coach Marshal Davis donated stem cells to 5-year-old Jacob) and held at Bensalem High School (where Jeff and I met).  We saw some old friends from youngest son Keith’s fencing days.  It was fun to see the athletes in their whites and crazy socks and hear the clashing of blades and the beeping of the scoring machines once again.  

The condition of Jeff’s face, healing from the topical chemotherapy but flaring red and, in spots, crusty with scabs, started a few conversations about skin cancer.  One spectator was a 30-year survivor of a skin cancer that had metastasized to some of his lymph nodes (which were removed).  An event photographer shared pictures of her Moh’s “nose job” in all gory detail and shared her amazement in the remarkable healing that took place afterwards.  A Gift of Life volunteer told Jeff that her father made a burka so that he could attend her outdoor sporting events without risky sun exposure.

Each day Jeff’s face looks a little better - until he exerts or sweats.  Then his spots get angry-looking and his scabs turn yellow.  It will be interesting to see how quickly he heals now that he is finished with the chemo lotion.  In a couple of weeks he’ll have had his Moh’s surgery and then, hopefully, his skin issues will settle down for a while. 

Next on the doc agenda is a CT uragram ordered by the urologist.  When I called to schedule the appointment, I was asked whether Jeff is allergic to dyes.  I never know quite how to answer questions about his young immune system.  “Well,” I said, “as far as we know he is not allergic to dyes.  If it is really important, I can ask his bone marrow donor whether she is allergic.”  And so I did.  However, the question and the reason for the test caused Nicole some concern.  We believe it is a just-in-case, age-appropriate test to check on some issues he is having.  We don’t expect anything dire to be revealed.  I wish I hadn’t made Nicole nervous.  She is so sweet to worry and very kind to get her prayer team on the job. 

 

Jeff sometimes suffers from “doctor fatigue” but I think his skin cancer made him realize that he needs all his docs and that he must be vigilant.  En garde!