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.  

Sweet Swedes

Jeff’s hospital stay this month cost him valuable time in completing the little cherry tables he was making - a wedding gift for my nephew and his wife (Mr. and Mrs. Claus) and another for his bone marrow donor, Nicole.  We’d been planning to deliver the two gifts on a road trip to Nicole’s home near Atlanta, Georgia, with a side trip to the Claus home in Greenville, North Carolina.  The swelling in Jeff’s leg was showing no sign of improvement and I assured him that we could make the trip without the tables and deliver them at some future date, if necessary. 

Jeff was highly motivated to complete the projects and his recuperation was centered around what he felt able to do each day in order to get the job done.  Kim offered a day’s help and the two of them got the tables assembled and ready for finish.  Jeff applied the finish coats with only just enough drying time before our departure.

We are still glowing with the love shown to us by Nicole and her beautiful family.  Nicole and her husband, Scott, opened their hearts and home to us and we instantly felt as though we were visiting family.  In fact, we saw actual relatives, too.  Jeff’s cousin, Phil and his wife, Lori, live in the Atlanta area and they joined us at the Georgia Aquarium on Saturday.  Their daughter, Piper, and Olivia got along great and the two young families found that they had a lot of common interests.  The aquarium provided excellent photo opportunities and my phone was busy all day capturing the fun and, we’ve been told, pictures of Jeff and Nicole looking like siblings or cousins.

Nicole and Scott hosted a dinner party on Sunday so that we could meet Nicole’s family.  They had walked with Nicole during the bone marrow donation process and it was fascinating to hear more about the experience from their perspectives.  We met Nicole’s Aunt Janine whose loss of her sweet baby Nicholas when Nicole was a teenager inspired Nicole’s involvement with Team in Training and ultimately inspired her to swab her cheek for the Gift of Life bone marrow registry.  Janine and I blubbered in each other’s arms before getting to know a little bit about each other’s caregiving experiences.  Janine shared a photo album of Nicholas, some pictures showing a happy, healthy boy, and others while he was in treatment – still happy.

We met Nicole’s Aunt Karen who thankfully had not moved from the address Nicole listed on her bone marrow registry paperwork (all her other contacts had moved!).  Karen honored little Nicholas by bringing M&M’s, a favorite candy of his. 

As I suspected, Nicole’s mother, Debbie, had some misgivings about Nicole donating marrow.  She worried about Nicole’s health since she had given birth to Olivia barely a year earlier.  Still, Debbie would not dissuade her daughter from doing something she’d decided to do and she accompanied Nicole to New York for the pre-transplant testing and again for the actual donation.  Debbie was alone for most of the two and half hours that Nicole was under general anesthesia - a very stressful time, indeed. 

Nicole’s grandmother and other family members asked questions about Jeff’s experience and how he is feeling now.  I think it was surprising to them to learn that Jeff’s chimerism tests show his blood is 100% produced by Nicole’s marrow.  Jeff refers to the education we have gotten as a result of his illness as “Biology 101.”  We shared a little of our enhanced, practical “Biology 101” education.  For all the science involved, it is still a miracle that Nicole’s marrow, collected in a NY hospital and delivered in a plastic bag to the Hospital of the University of Pennsylvania in Philadelphia, dripped into a Hickman catheter in Jeff’s chest over a four-hour period, then found its way to where it needed to go to begin making blood, and that it continues to make healthy blood today.  They seemed to share our awe and our joy and we are very glad to have met them.

Since ethnicity matters in bone marrow transplantation, we were interested to hear about Nicole’s ancestry.  While Jeff is German-Irish-French, Nicole is Swedish-Polish-French.  Fascinating!  We learned that Nicole’s great-grandmother lived to age 93.  I think that bodes well for Jeff’s longevity!

We loved being honorary members of the family and enjoyed staying in Nicole and Scott’s beautiful home.  Nicole and Scott are good parents and their home is a joyful one.  We were treated to an earnest rendition of “Let it Go” from Frozen by guitar-toting 5-year-old Olivia.  On our last evening we gathered on Olivia’s bed while 7-year-old Evan read The Butterfly and the Carpenter Bee, the book we wrote for the children to show them what their mother’s gift means to us.  It was beautifully read and I can’t believe I didn’t cry.

We had an easy two-day return trip to Pennsylvania.  We traveled on a Monday holiday (President’s Day) so traffic was light.  It snowed overnight Monday night so schools, businesses and the federal government were closed on Tuesday.  Again traffic was light and the roads clear and dry.  We got home early Tuesday evening with ample time to crank up the snowblower.  I texted Nicole:  a picture of Jeff at the machine, snow flying, with the caption, “Georgia on our minds.”  Having met Jeff’s blood sister, we will always feel a tug south.  We look forward to hosting them sometime soon and continuing our quasi-familial, serendipitous relationship.

A Week of Progress

"What did you do today?” I asked Jeff when I got home from work.

“I walked through my shop,” he told me.

“Oh? And what did you do there?” I asked.

“I walked through my shop.”

That was last Monday’s big achievement.  On Tuesday he did some light housework and spent about a half hour in his shop which ended shortly after he gave himself an abrasion with the orbital sander.  He was relieved that it only bled a little and not onto his work.  By Wednesday he could do some errands and he spent an hour on the stool in his shop.  Thursday after his follow-up doctor’s appointment (all good news), he spent the rest of the day in his shop and then he walked .7 miles to the car shop to pick up his truck which was in for inspection.  This was a route he has taken before but it was in the 20s and he has a limp.  He said it felt as if it took a very long time to get there.  He hobbled across Bridge Street at a crosswalk during rush hour but wasn’t fast enough for one impatient driver who raced by as soon as he possibly could.  Jeff related this to me while simultaneously demonstrating his ankle’s slightly improved range of motion.

At Jeff's follow-up appointment, Dr. Sullivan said, "I told you that you're not allowed to do housework, right?"

"You're kidding!"  Jeff was alarmed.

"Yes, I'm kidding," Dr. Sullivan said.

In addition to dispensing humor, the doc gave Jeff the go-ahead for a upcoming road trip to see his donor, Nicole.  I had been worried that inactivity, long hours spent in the car, might cause more clots to form.  Dr. Sullivan said to stop every couple of hours to walk and all would be fine.  He also defined "awhile" (as in how long Jeff's leg would be swollen) as "two more weeks."  You might think the swelling would go down gradually but it does not seem to be showing any signs of diminishing.

Sunday we attended church after having missed a couple of weeks due to Jeff's illnesses.  Many people welcomed Jeff back and were glad to see him looking fit.  The older women gathered around to ask about his hospital experience and which blood thinner was he on.  As we got in the car to go home, Jeff grumbled, "Great.  Now I have something in common with the old ladies."  There are certainly worse things.

Sadly, we had learned that Mike, our church's "second miracle," had died after surviving just a few weeks with a new pair of lungs.  The news hit Jeff, me and our entire congregation quite hard.  There was audible distress in the sanctuary as we heard the news and felt deeply sorry for his family.

We ask for prayers for Mike's family as well as all those who have lost loved ones to horrible disease.  And prayers, please, for safe travels for our trip to Georgia to see Jeff's blood sister, Nicole.

Home Again, Home Again Jiggity Jig

Jeff was moved from ICU to the Telemetry Unit late last night.  I arrived at St. Mary Medical Center this morning to find him looking much, much better and much, much happier.  Unfortunately, his leg and foot were more swollen and harder and hotter than ever.

A text exchange with Dan answered the burning question, “What is Telemetry?”  We had a pretty good idea already since my mother had been in the same unit a few years ago.  Jeff’s sense of humor has returned - welcome evidence of his improved condition.  He quipped, “I thought I’d be learning how to read minds here.” 

Yesterday Dr. Kravatz led us to believe that being symptomatic would delay Jeff’s discharge.  Today, however, Nurse Chinnamma assured us that it takes “awhile” for that to clear up.  Jeff had only gotten out of bed one time yesterday to use the bathroom and walking had been very difficult so it seemed to us that he was not yet fit to go home.

Kim came for a visit this morning and at lunch time, she and I went to eat in the cafeteria.  Naturally, that is when Jeff’s doctor came to his room.  Dr. Raghan was not concerned about the swelling, even after Jeff pointed out that the leg was much larger compared to his right leg and that it was worse today than yesterday.  It takes a while, evidently.  Jeff asked all the questions I would have asked if I had been there (good job), like how they know they got all the clots.  Dr. Raghan said they did an ultrasound after his procedure yesterday morning and everything was clear.  Dr. Raghan told Jeff he could be discharged.  This was a surprise since he had not yet taken one of his new pills (something we were told was necessary before discharge).  Well, we told ourselves, “Discharge Today” could mean 9 p.m. so we tried to remain patient.

Jeff was told he could get dressed.  We had to unlace his sneakers to get the foot inside.  Once dressed, he sat on the edge of the bed.  In came two older gentlemen looking for “Harry.”  They were very confused because they had just gotten Harry’s room number from the information desk. 

Jeff said, “Harry isn’t here but if you want to visit me, come on in.  I’m  Jeff.” 

Then Jeff and I both realized we knew Harry!  He was Jeff’s roommate on Thursday.  We were able to tell the men that Harry was in Room 254, not 264.  It is like being in Home Depot; people are always asking Jeff where to find things.

Within a short time Nurse Chinnamma came in with his new Xarelto pill, disconnected his heparin and IV fluids, then she left the room with a promise to bring discharge papers.  I have never seen a speedier hospital discharge (and I have seen many).  It was hard to believe it was happening.  Surely we’d have to wait for transport.  That could take a long time, hours even.  Not this time!  Nursing Assistant Kel came with a wheelchair and took Jeff himself.  Kim left to bring the car around front and we beat her to the door by several minutes.  Whoosh!  In no time, we had Jeff home and nestled in for a nap. 

As glad as I am to have him home, I admit to being anxious about the swelling in the leg and foot.  Of course, we want him to move as much as possible to avoid a repeat of the problem but he thinks he ought to have a cane since he needs to hold on to things in order to walk safely. 

Jeff says he can’t wait to see the TV ad for Xarelto to be reminded of all the potential side effects of his new drug.