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!

Squeamish, Squamous

Within two days of each other Jeff and I were both mistaken for fitness buffs.  A member of our church thought I was a gym teacher (she doesn’t know what gave her that idea; nor do I since brisk walking is my game) and Jeff’s oncology nurse, Heather, tried to recruit him for a 5K run to benefit Be The Match bone marrow registry.  We had a good laugh about it and were maybe a bit too proud that we could pull off these misconceptions.

Dr. Samimi and Jeff spoke at length on the phone to discuss the results of his skin biopsy.  Rosie played happily on Grandpop's lap as he tried to take in the details.  He called me afterwards and told me, “The type of cancer I have sounds like ‘squeamish’ but it’s not.”

A quick Google search of skin cancer and there it was:  Squamous Cell Carcinoma.  He has two significant risk factors – radiation and immunosuppressant use.  This cancer tends to recur and puts him at higher risk for other skin cancers.  Mohs surgery on the biopsied area later this month (a whole-day procedure of scraping and scanning, scraping and scanning until no cancer is detected at the margins of the tumor) as well as regular visits to the dermatologist are warranted.

The sores on his face, the result of topical chemotherapy, are quite remarkable in quantity and appearance.  Other patients might hide indoors for a month but Jeff takes it in stride.  He says, “When I look out of my eyes, everything looks the same as usual.”  When he is out in public, he forgets that he looks diseased until he catches someone staring at him.  I like his attitude.  It means we can carry on as usual.  No hiding.  He admits, however, that he finds his reflection alarming.  If you are squeamish, do not scroll to the photo at the bottom of this post.

Jeff seemed discouraged by this new development.  “This is bad,” he said.

“Not at all,” I said.  “We caught it.  People don’t die from skin cancer if it’s treated.”

Jeff began to list the people we knew who had died of skin cancer.  Well, there were more than I realized and the fact that he could list them so readily gave me a glimpse into his deepest thoughts.  For most of those people – as for Jeff, skin cancers were their secondary cancers.  A good reason for diligence.

At Dr. Porter’s office this week, Jeff was tempted to pull an early April Fool’s joke on Heather and Dr. Porter by allowing them to comment on his scary, scabby face and then pretend, “What do you mean?!  Is something wrong with my face?!”  He didn’t joke, though.  Heather was able to offer more information about Mohs surgery and helped to alleviate some of Jeff’s anxiety about it. 

Jeff’s blood counts were good.  Dr. Porter is also monitoring immunoglobulins (antibodies).  If Jeff’s are low, he will need an infusion to boost his immune system.  I think this is what Doug Olsen (one of Dr. Porter’s early CART19 patients) has to do every three months.  Doug says it is no big deal.  Evidently, the results were good because the infusion was not ordered.

In a strange collision of three worlds, we were asked by Gift of Life to run a swab station at the national college fencing tournaments (our youngest son, Keith, was a fencer) which is to be held at Bensalem High School (where Jeff and I met).  We are looking forward to hearing the clinks of foils and epees (although perhaps not the beeps of the scoring machines) and to see our old high school. 

Halfway through treatment