Catch the Fever! Light the Night!

Jeff and I have now met two people who have benefited from Penn’s gene therapy which was funded in part by the Leukemia and Lymphoma Society.  We met Doug Olsen, one of Dr. Porter’s first T-cell gene therapy patients, in April http://jeffs-journey.blogspot.com/2014/04/white-kneed-jeans-and-other-joys.html and Steve from our Gilda’s Club support group. 

At Gilda’s Club this week Steve smiled and shook his head in awe at his own survival.  He’d had an extremely aggressive lymphoma that responded poorly to traditional treatments (the chemo/radiation Jeff refers to as “bloodletting” except they often work albeit with lingering side effects).  Steve managed to get into a gene therapy study that he didn’t technically qualify for (he was worse off than the patients they were accepting).  While Doug Olsen’s fever began about a month after receiving his genetically-modified T-cells, Steve’s began the evening after his.  The fever accompanied the virus-like spreading of the cancer-killing genetically modified T-cells.  I know this sounds somehow surreal, even unreal, but Steve reports that he was cancer-free within a week!  He states simply:  “Everyone should be getting this treatment.”

Here is one of many articles on the subject: http://www.usatoday.com/story/news/nation/2013/12/07/gene-therapy-scores-big-wins-against-blood-cancers/3902431/

These are exciting times in the field of blood cancer!  Please support our Light the Night team by using the link at right to help L&LS continue their critical work.

One of the Winners

“It’s nice to see you again,” said Daniel.

Young Dr. Daniel wasn’t just exchanging pleasantries.  He was genuinely glad to see Jeff who Daniel describes as, “one of the winners.”  We can only imagine a typical day in the life of an oncologist.  He probably sees more patients at critical stages of diagnosis and disease so that seeing happy, healthy Jeff provides a nice reprieve.

Dr. Daniel is in his first year of a two-year fellowship with Dr. Porter and is clearly star-struck by his idol.  “We wait in line for the opportunity to work with Dr. Porter,” he told us.  I mentioned seeing Dr. Porter’s picture in the US Airways magazine on our way to California.  Dr. Daniel had seen it, too, and remarked that “lots of things are happening right now” and that Dr. Porter had recently published “another big paper.”  Even though Jeff didn’t qualify for Dr. Porter’s trials, it is a good feeling to know the man is so accomplished.

Jeff’s relatively minor complaints – profuse sweating, nausea, leg cramps – are likely attributable to the immunosuppressant, Cellcept.  Dr. Porter said 3-20% of patients report issues with sweating although he’s actually never heard any of his patients complain of it.  Nausea is far more common among his patients on Cellcept.  Dr. Porter decided to cut the dosage in half and check Jeff’s liver function again in a month.  He feels the side effects will diminish considerably on this dosage. 

Lots of blood was drawn this morning - more than usual - and when Jeff questioned it, no explanation was offered.  I think maybe he was due for more extensive testing – maybe the test to make sure his blood is all Nicole’s (an Engraftment Analysis).  Jeff needed food quickly after “giving” all that blood.  Due to a problem with SEPTA, we’d arrived late and hadn’t gotten our usual breakfast at Gia Pronto on the ground floor of the Perelman Center.  The 7:07 a.m. train from Yardley hadn’t reached the next stop before police activity forced us to return to Yardley.  Evidently, a pedestrian had been hit by a car on the tracks.  Instead, we drove into the city in rush hour traffic.  Still, our stressful drive couldn’t compare with the bad day that pedestrian was having. 

 

Jeff acquired a verboten tan while visiting our youngest son, Keith, who is stationed at Camp Pendleton in southern California.  It was a great trip!  Kim came along with us and it was good to see brother and sister together.  Keith looked quite mature.  We also visited niece Lissa and her beautiful family and worshiped with them, leaving a note behind for their congregation: “thanks for praying for Jeff through his bone marrow transplant and recovery.”  We saw a lot of Spanish architecture, got our toes in the Pacific (well, Kim and I did, anyway) and Keith was glad for our visit. We left sunny California and returned to a rainy Philadelphia. 

 Our blog has now been read on five continents.  We are awed by the network of blood cancer patients and caregivers and pray for all those people who find us on the web and maybe get some comfort from Jeff’s story.  He is, after all, “one of the winners.”

A Preference for Boob-Squishing

This morning over breakfast, I reminded Jeff that he should request an EKG at his physical with the family doctor.  He’d been putting off this visit by arguing that he sees enough doctors already, why invite trouble?  And as for that EKG, “Why would I ask them to do that?  They’ll just refer me to a cardiologist.” 

 

“So, if there is something wrong with your heart, you’d rather not know about it?” I asked.

He grabbed his pill bottle and grumbled, “I have to take my darn pills.”

I smiled and suggested he think of them as his life-sustaining medications instead of his “darn pills.”  And I added, "Maybe the doctor will have nothing but good news for you."

The poor guy is doing well enough to feel as if he doesn’t need doctors and pills.  He has had some mild depression – mostly because of fatigue – but that seems to have passed for now, as has the extreme fatigue.  And he has had some symptoms that warranted a visit to the urologist and a few fascinating urological tests (although I don’t think he would describe them that way).  After one of these tests I received a forlorn text, "I think I'd rather do a boob-squishing."  My sisters later insisted he would not prefer a boob-squishing.  However, this test caused bleeding and burning for days afterward.  Ladies, we'll have to give him this one.

It turned out to be a good doctor visit – good blood counts, good heart, good cholesterol, good kidneys.  Dr. Sullivan prescribed a medication which might help with the nighttime leg cramps that interrupt Jeff’s sleep 1-6 times per night.

 

Highlights of these glorious days include the long-awaited unveiling of Jeff’s latest metal sculpture (see photo), Rosie’s first steps and Amy’s graduation party.  Jeff is preparing a temple talk for Sunday in which he will talk about his journey and, of course, Wonder Woman Nicole, whose healthy blood cells continue to flow happily through Jeff's veins.  He hopes to convey how prayers are often answered in unexpected ways. 

We Should Tell Nicole

Jeff and Rosie were having some early morning snuggle time in our bed while her parents were visiting friends in Germany.  Jeff said, “We should tell Nicole.” 

I was not quite awake.  I asked, “Tell her what?”

“How much fun this is and she made it possible.”

When we are having fun – and that is quite often, I am happy to report - Jeff and I often think of his donor, Nicole.  Here are some photos of our fun summer.

Hugs and kisses to Nicole. XO

Kerry, Theresa, Kim, Jeff, Rosie at the Parade

At Rilling's Pool

Reliving our Youth in Ocean City, NJ

That's me!

Grape Harvest

Rosie and Kim at Constatter Volkfest, Philadelphia, PA

Joy & Love :-)

OICURMT and the MDS Foundation

Jeff and his brother, Paul, met at Bald Eagle State Park for a few days of fishing the week before last.  Many fish were caught - and released - and they took a Segway tour of Penn State's campus (Paul is an alum).  Jeff called me the night before their tour and said he expected his Segway may go out of control if The Creamery was not to be a scheduled stop but, of course, it was.  Paul managed to squeal the tires of his Segway in a near accident which gave them a good laugh – later, and every time Jeff has told the tale since.  Jeff keeps talking about the beautiful Nature Inn (a gold LEED building) and the good time he had.  Thank you, Paul!

An invitation to a luncheon for MDS families in Margate, NJ, gave us a good excuse for a weekend down the shore.  Friday night we relived our youth on the Ocean City boardwalk, squeezing into a photo booth, playing mini-golf, riding the Carousel and bumper cars.  Fun!  Saturday morning we visited Margate's famous Lucy the elephant, climbing a circular staircase up one hind leg, touring her belly, checking the view from her eyes and from the howdah on top, then down the twisty staircase in her other hind leg.  She is in excellent condition at 133 years old!

Rochelle Ostroff-Weinberg hosted a group of MDS patients and caregivers at her home in Margate.  Two of the couples in attendance had been married for more than 50 years so we were the young ones of the group unless you count the caregivers who'd been married 25 years.  Sudha Allitt, a holistic health and spiritual counselor, led us in some Mindfulness practices - breathing and meditation.  We learned about the various types of breathing (angry, calm, happy, fearful, etc.) and the healing properties of slow breathing.  Jeff enjoyed the exercises, could definitely see their value, but got stuck on the instruction to feel the breath of the feeling you identified.  Did it have a breath? Jeff says he does similar things naturally to deal with stress and, in my opinion, was more receptive to the presentation than he might have been pre-cancer.

Our meeting lasted twice as long as scheduled. Perhaps we needed each other twice as much as expected. Rochelle was gracious enough to let us stay and talk everything out.  One woman had never met another person with MDS.  We all learned something from each other about treatment options and issues, web sites to check out, how to find a local support group, diets to try.  Rochelle laughed remembering her late husband, Bob, trying a "weird vegetable diet" that was supposed to be beneficial.  He hated it.  He persevered for a year until he gave it up as a good effort, not worth the trouble.

We left Rochelle’s house and walked nearby Ventnor City's promenade and streets, overshot our parking spot by half a mile which added a mile to our stroll.  Then we returned to Margate for a lovely bayside dinner at Lamberti's Sunset Marina and Restaurant - Rochelle's recommendation.  We did not last until sunset but it was beautiful nonetheless.

En route to our weekend adventure, we'd listened to an audiobook, Secret Ingredients, an anthology of pieces by well-known food writers.  The first essay, by Joseph Mitchell, was about "Beefsteaks," a sort of Beef-and-beer of yesteryear.  There was a sign at one such event that read "OICURMT" - a condition meant only to be temporary.  Connecting with the good folks at the MDS Foundation luncheon gave both of us a sense of fullness.  It was good to refuel together this weekend.

 
After two weeks off of Rosie-duty Jeff is anxious to return to his regular Monday-and-Friday schedule.  He misses her and I'll bet the feeling is mutual.  I'm looking forward to the Monday morning picture Jeff will email to me at work. Maybe it will show our little Rosie Posey walking on her own!

Stairway to Bed

Jeff and I discovered that three months is about as long as we can last between his oncology appointments without our anxiety becoming unbearable.  This was the longest he has gone without seeing Dr. Porter since BMT – and the assurance provided by the many blood tests they run each visit.  Jeff, who is usually Mr. Calm, was starting to express his concern.  His worry became my own.  This allowed for some good conversations about his priorities and our goals.

No, he had no major symptoms that caused our freak-out.  He’d had a dexascan to check his bone density and there was a 10% change on one of the measurements.  A couple of the measurements showed “Significant” change.  Jeff thought of our support group friend who has moth-eaten bones from Multiple Myeloma and, well, got to thinking too much.  I assured him that Dr. Porter would “pooh-pooh” the results of the bone density test and my niece, Nurse-to-be Becky, agreed it probably wouldn’t be a great issue.

As I reassured Jeff about his bones, I began worrying about the amount of sleep he needs.  He has been working more and comes home absolutely whipped.  After a day’s work, his voice is weak and he answers questions with Mmm’s and eh’s.  He often heads directly to bed, sometimes without showering first.  I couldn’t help wondering whether it was only the physical labor that exhausted him. 

Between his Mondays and Fridays with little Rosie, Jeff managed to complete a custom staircase job - which also involved wallpaper removal, replacing trim, installing hardwood flooring and painting.  This would not have been a big job for him pre-BMT.  This time he enlisted the help of a friend for a couple of days.  After it was finished, he admitted that he might have taken on a bigger job than he ought to do these days.  In addition to the physical demands of this job and an exterior painting job he also took on, there was a fair amount of worry about what it would take for him to finish.

Tuesday he saw Dr. Porter.  His blood counts were good, with Hemoglobin hitting a new peak, 14.7.  Nurse Heather and Dr. Porter both told him that his three-year survival bodes well.  They discussed his neuropathy and Jeff said he wasn’t sure the Neurontin does any good.  Dr. Porter said to experiment, then, and drop one pill.  The results of the liver function tests were not yet available so he could expect a phone call about those.  Jeff came home a little relieved and sheepish about our unnecessary hand-wringing.

On Thursday Nurse Heather called Jeff.  He sensed that Heather was reluctant to give him the news:  a recurrence of GVHD.  He has to go back on the immunosuppressant, Cellcept, because his liver function test results were elevated.  He’ll have to have those tests run again in three weeks.  At least GVHD can be managed. 

Oh, well.  Down one Neurontin, up four Cellcepts (the dreaded empty-stomach pills).  Net change:  +3 pills.