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

Swab a Cheek, Save a Life at Rider University's Relay for Life

Rider Staff Member Richard Kopp joins the registry

Dr. Bryan Spiegelberg (a stem cell donor and Rider faculty member) put me in touch with the Pre-med Club and some very capable volunteers for our Gift of Life swab station at Rider University’s Relay for Life.  Olivia and Devon took the online training that Gift of Life provides and, together with Rushit, the students added 63 potential donors to the bone marrow registry.  Now we pray that one – or more – of them is a match for a cancer patient somewhere, sometime!

Jeff and I were invited to the Survivor/Caregiver dinner prior to the start of the Relay.  We walked into the meeting room which had been decorated for a Dr. Seuss-themed birthday party.  Jeff turned to me and said, “This isn’t the right room.  This is for kids.”

I reminded him that the American Cancer Society is “the official sponsor of birthdays” and that his 4^th birthday (post-transplant) is only a few weeks away.  “Yes, this IS for you,” I assured him.  We sat down to play Name-that-Dr. Seuss-Book while we waited for the festivities to begin.  Jeff is fond of quoting Dr. Seuss and so together we did a good job of deciphering the clues.

Mike and Jeff discussed cancer - and the old neighborhood

Love those shirts!

We shared the meal (delicious!) with other Rider staff members who were either survivors or caregivers including Vickie whose husband grew up in the same neighborhood as Jeff.  Mike and Jeff had a lot to talk about – not just their cancer journeys.  We also met survivors and caregivers who were relatives of Rider students.  One family's team shirts featured a wooden spoon with the message, “Beat Cancer.”  We had to learn the significance of the spoon!  Their team’s honoree was their Italian mama, a petite pretty woman, who doubtless stirs both meals and hearts.  It would have been great to have one of Jeff’s hand-turned spoons available to give her.  Maybe next year.

Survivors are invited to lead the relay and somehow Jeff ended up carrying the banner right up front.  He took his role as a member of the banner-carrier team very seriously.  I think he was tempted to do his defiant fast-walk to show just how well he is doing but he looked back to gauge how the other survivors were doing.   Some are currently in treatment and not fit for a fast pace.  While the Survivors took their lap around the indoor track, about 800 people on the gym floor below cheered and cheered – through the entire lap! 

Vickie, who’d attended this event before, stood beside me and said, “Didn’t I tell you?” 

She’d described the Survivor’s Lap as pretty emotional and, in fact, we both had wet eyes.  We stood shoulder-to-shoulder and marveled at the endurance of our men and the road we’d taken (are taking) with them.  The second lap included Caregivers and so Vickie and I joined our guys and the other members of the Cancer Coterie (the club you never wanted to join but through which you meet some really nice folks).

Olivia and her Dance Team friends - Swabbers among them!

We are grateful for the students and staff who organized Rider’s Relay for Life, the students who stepped up to run the Gift of Life Swab Station, those who swabbed to join the bone marrow registry, and the teams who raised money so that the American Cancer Society can continue to do their work on behalf of patients and families.  Well done, all!

More Time for the Toilette

"With my new lotions, potions and stocking I’m going to need to allow more time to get ready in the morning,” Jeff said.

It’s true.  Recent trips to the vein specialist and the dermatologist resulted in adding a couple of extra steps to his morning toilette. 

The vein specialist ordered a much longer compression stocking than the calf-high, seldom-worn one he already owns.  The new one is thigh-high (very sexy) and tends to fall down during the course of the day.  I recommended a garter belt although my own memories of that diabolical accoutrement are not favorable ones.  (Pantyhose had been invented by the time I was of age for stockings but my well-intentioned mother thought my first pair of stockings ought to be the old-fashioned variety.  Garter belt + mini-skirt = uncomfortable!)

The dermatologist ordered a topical chemotherapy to take care of several pre-cancerous spots on Jeff’s face.  One spot was biopsied.  Dr. Samimi recommended doing this month-long treatment now to avoid having the burning sensation made worse by hot weather.  It is impossible to know whether these spots are the result of his radiation treatments although skin cancer was one of the many side effects of BMT pre-conditioning he was warned about prior to giving consent.  We tend to think that radiation sped up conditions that might have occurred anyway. 

After one week of treatment, Jeff’s face has undergone texture and color changes with the current expression being the appearance of more red spots than he began with.  Rosie often rests her little hand on her grandpop’s cheek, earlobe or neck as if it were a security blanket.  Jeff will have to be careful to keep her from touching his face when the ointment is freshly applied (within an hour or two of application according to Dr. Samimi).  We have a couple of swab events coming up.  It would be nice, but not essential, if Jeff looked his healthy-best when encouraging young folks to join the bone marrow registry.

Our Gilda’s Club blood cancer support group hadn’t met for a couple of months due to snow.  It was really good to meet this week and hear that Diane is in remission, Lincoln’s counts are perfect, Steve got proton therapy and is still smiling and marveling at his survival, and Michael gave his Multiple Myeloma Journey Partner talk in San Diego and has been invited to speak at events in Chicago and Dallas this spring.  This group laughs a lot and also shares the scary bits, the uncertainties associated with living with blood cancer.  We’re so glad we found Gilda’s Club and this group. 

Jeff mentioned that a few of his docs are scheduling follow-up visits in September.  I suggested he make it a point to schedule other visits in September, too, in the hopes of having a month or two without any doctor visits.  This is a strategy we hadn’t thought of before but might help to avoid what Dr. Samimi referred to as “Doctor Fatigue.”  We’ll see how that works.

Fruit of the Spirit

Jeff gave his talk to the Morrisville Presbyterian Youth Club, the one that was postponed in January when he ended up in the ER.  This was his longest talk so far – 45 minutes – and the first time he used a PowerPoint presentation. The night was bitter cold and attendance was light.  After a meal of breakfast-for-dinner, the youth circled their chairs to hear about Jeff’s medical and spiritual journey and the parallel story of his donor, Nicole.

Jeff began by asking the young people how many of them had been affected by cancer - any family member or friend.  Several hands went up.  Jeff said, “Yes.  When I was diagnosed, I asked my congregation for prayers during a Sunday morning service.  After the service, many people told me they were cancer survivors.  I had no idea so many people that I knew had dealt with the disease.”

He talked about his faith background, the many folks who prayed for him throughout treatment, the progression of his disease, his recovery following bone marrow transplant and the concerns we had about his donor before and after transplant and the eventual contact we had with her.  He talked about the humor and joy he continued to find.  He showed pictures of the spoons he turned for those who assisted him in some way including those who drove him to treatments, his doctors and nurses, Nicole and the staff at Gift of Life who facilitated finding his donor.  And he talked about the things he has enjoyed since being given the gift of life, especially granddaughter Rosie.

This year’s Youth Club theme is “Fruit of the Spirit” (Galatians 5:22-23) and the kids identified several of those in aspects of Jeff’s story: joy, patience, kindness, faithfulness and love.  Jeff was happy to tell his tale to this attentive, faithful group of kids.