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. 

Gift of Life Swab and Slobber

We’ve had a beautiful weekend!  We took Rosie to the Grounds for Sculpture Friday afternoon, she and her mother helped us run a swab station yesterday for Gift of Life.  Then we drove into Philadelphia with Kerry, Theresa and Rosie to meet Kim for a Father’s Day Eve dinner.  Lovely weather!  Lovely company!

The Gift of Life swab station was at the Hamilton YMCA training day (aka Pep Rally) for 1200 camp counselors.  Jeff’s job was to address the crowd and encourage them to join the bone marrow registry.  This he needed to accomplish with only two minutes at the microphone.  That didn’t leave a lot of time for details of his story so he whittled his speech down to essentials and added a bit of competition, “Freehold is way ahead.  And Lower Bucks, you’re in my neighborhood so I want to see you at our table!”  At that point, we’d only collected DNA from eight potential donors – all from Freehold - so he was particularly clever to turn that into a game. 

We had a steady stream of people swab all morning.  Our collection team included Jeff, Theresa and Rosie (good advertisement for why Jeff is glad to be alive), Stem Cell Donor Frank, Nick Hudson from Gift of Life and me.  Often Jeff was out of sight somewhere and I eventually realized that he was carrying Rosie around the grounds, talking up Gift of Life whenever he saw that we were ready for more “customers.”

Some of the young people were embarrassed when the swabbing action caused them to slobber.  Others asked, “Is it okay if I just ate a Jolly Rancher?”  or “…had gum?”  Jeff teased the gum-chewer, “Just stick the gum in there!” but I don’t think she did.  Some people needed to tell their stories, their reasons for their willingness to join the registry: “my cousin,” “my brother,” “my niece.”  One man asked Jeff, “Can I talk to you?  I just lost my dad to AML.”  Some seemed nervous, others more committed.  We loved them all. 

Stem Cell Donor Frank’s story is a particularly good one, well-known among Gift of Life staff members.  When Nick realized who Frank was, he said, “Oh, you’re that guy!”  Frank donated at Robert Wood Johnson Hospital the day after Hurricane Sandy in a lab opened just for him – which was running on generator power.  He had to use a back door - and maybe even a secret handshake (not really).  I told Frank how nerve-wracking donation day was for us, when Jeff was without marrow, very sick and waiting for his life-saving juice.  The family of Frank’s recipient had the added concern of a hurricane and power outages.  What a nail-biter!  Sadly, Frank will never meet his recipient.  Still, he is hopeful that he will be someone’s match again.  Awesome guy!

Nicole once told us about the special blanket Gift of Life donors are given on their donation day.  The GOL staff member who sits with them during the donation brings a blanket that has been signed by each of the Gift of Life staff members, thanking them for their donation.  It was nice to hear Frank and Nick, who is also a donor, talk about their blankets with the same reverence Nicole has for hers.  Gift of Life really knows how to take care of people.   

Prayers, please, that all those who swabbed yesterday feel our gratitude and  that among the swab kits now on their way to the lab, the identity of a hero may be made known.

Then and Now

I sat at at the kitchen table loading Jeff’s pill box for the week.  When I’d plunked the last pink pill into SAT PM, I studied the contents and felt as if I had forgotten something critical.  An email exchange with Dr. Porter’s office last week confirmed that Jeff could stop his prophylactic antibiotic and antiviral medications since he has stopped taking the immunosuppressant Cellcept.  That leaves only three pills in his arsenal:  a prescription calcium for his bones, Neurontin for neuropathy and a multivitamin.

A gallon freezer bag is supposed to corral the medications that are no longer required but several bottles spill out if you try to pick up or move the bag.  Suddenly I realized that instead of stowing any more bottles in this bag, it was time to dispose of the whole kit and caboodle!  Some of this stuff is pretty toxic.   I pulled out the prednisone for GVHD – just in case, checked with Jeff to see whether he agreed it was time to toss it all (he did) and Googled “Where to dispose of medications near 19067.”  Then I thought it would be fun to take a picture of the two bags.

Jeff has been working steadily on his non-Rosie days and is approaching his third birthday, the anniversary of his BMT, on May 27th.  

May Celebrations: Rosie's first birthday, my graduation, Kerry's 30th birthday, Kim's 28th birthday and Jeff's 3rd "birthday"  (We're missing our Marine Keith who is in California.)

Three Cheers for the Caregiver

Four seats ahead of us, facing us, a thirty-ish woman rested her head her honey’s shoulder as we traveled out of Philadelphia on SEPTA.  I would have recognized the posture even if I hadn’t noticed that her beautiful bald brown head had nary a hair follicle - smoother than a shave could achieve and evidence of her endurance.  She and her good looking, curly-haired beau were adorable, sharing secrets and smiles with their foreheads never more than an inch apart. 

At their stop, they got off the train and paused at the top of the stairs that would take them to street level.  She linked her arm through his and they put their heads together again as if they’d missed each other during the 10-foot walk from the door of the train to the top of the staircase.  They laughed, she let go of his arm, he stooped slightly and she jumped on his back for the descent down the stairs.  Too cute!  Was she too tired to carry herself one step further?  Were they just enjoying themselves?  Anyway, I couldn’t help being impressed by the young man’s strength – and recognizing that we caregivers find ourselves doing… well, whatever is required.

We’d been to the White Dog Café on Sansom Street in Philly for an MDS Caregiver luncheon.  Patients were invited as well but the event was intended to focus on the caregiver.  Mary Walton, Nurse Ethicist and Director of Patient/Family Centered Care at HUP, kept our discussion focused on the role of the caregiver, our anxieties and joys.  Rochelle Ostroff-Weinberg from the MDS Foundation - and an MDS spouse herself, contributed to our discussion with her 16-year experience.  The timing of this event coincided (deliberately, as I understand it) with the one-year anniversary of her husband’s death.  Wow!  Talk about strength. 

Two of the patients represented at the table had considered or are considering bone marrow transplant.  I was glad Jeff had decided to come along with me because he was looking mighty handsome in his baby blue shirt with UV protection.  He was the picture of health!  I told him he was the poster boy for BMT and maybe helped others see that it can be a very good thing – though, admittedly, very scary.  This is exactly what Jeff sees as his contribution – sharing his story and encouraging others.  As for me, I found the discussion very helpful.  Hugs and email addresses were shared at the end of the meal.  

Jeff has had a sinus infection for three weeks and he just couldn't seem to kick it.  He took Amoxicillin for ten days and was wiped out the entire time.  We waited for our family doctor to respond to our phone calls to request an additional course of antibiotic and ultimately found it necessary to change doctors.  We're back to a practice we used years ago and since they are in the Penn Medicine system, they will have easy access to all of his BMT records.  I think it was a good move.  After three days of Azithromycin, Jeff feels a whole lot better although he has had several bouts of diarrhea.  Oh, well.  Perhaps that's the trade-off.

Prayers, please, for our new friends as they continue caring for their loved ones through ongoing treatment and treatment decisions.  Also, for Rochelle and her daughter who strive to help and support MDS families and, so, are the living legacy of husband and father, Bob.

White-kneed Jeans and Other Joys

The Leukemia & Lymphoma Society and Jefferson Cancer Center put on a very nice Blood Cancer Survivorship Conference last week.  Judy did Rosie-duty so that we could go.  Jeff thought of Rosie all day, even as he enjoyed the company of Michael and Monique, friends from our Gilda’s Club networking group.  We missed Connie and George from our group who would have appreciated the quality and quantity of food we were served.  We hope they are okay.  
 

The highlight of the conference for Jeff and me was not the keynote address on survivorship plans or the morning breakout session on BMT or the Chair Yoga class that put us in a peaceful place during the afternoon session.  It was not eating and laughing with Michael and Monique, although that was fun, too.  The highlight for us was meeting Doug Olson, Dr. Porter’s famous (to us at least) patient who’d had T-cell gene therapy about a year before Jeff’s transplant.  Doug told us that he goes for a treatment every three months for his immune system but that is no big deal.  He told us that funding for the trial stopped after his treatment and did not start up again until a year or so later. He was very fortunate to get the treatment when he did!  Here is good video news coverage of Doug and Dr. Porter:  http://www.cbsnews.com/news/new-weapon-against-cancer-comes-from-patients-own-bodies/     

More on Chair Yoga… We were told that we could remove our shoes or leave them on.  Since he didn’t know exactly what would be involved, Jeff decided to keep his neuropathetic feet protected – shoes on.  After some nice breathing, feeling the wind going around our organs, we began moving our limbs in controlled movements.  We held onto the seat of the chair and lifted our legs.  The instructor told Jeff to sit back further on the seat and then said, “Oh, you have really long legs.  You’re fine.”  Then we planted our feet on the floor and pressed our heels down, feeling each toe… Jeff interrupted the tranquility by jumping up out of his seat – Cramp!  His hamstring complained in much the same way muscle cramps wake him up in the middle of the night.  Even so, Jeff thinks he’ll try to catch a class when he goes down to Penn for his check-ups every two months.

 

At Jeff’s two-month visit at Penn’s Perelman Center on Tuesday, he talked to another patient as they waited for their labs to be drawn.  The man was a little agitated because they hadn’t called him in yet and he had a bone marrow biopsy scheduled quite soon.  Jeff asked him why he was watching the clock because they would do the biopsy whenever his labs were done.  It turns out the man was going downstairs to be sedated for it!  Jeff was impressed and thought it sounded like a really, really good idea.  His six or seven biopsies were done in the doctor’s office without so much as a valium. 

Dr. Porter gave Jeff some good news.  After many months (or maybe two years?) of weaning off the immunosuppressant (Cellcept/Mycophenolate), he can stop it altogether!  No more empty-stomach medications!  No more worries if a dose is missed!  For some patients, this day never comes.

Jeff’s lab results were posted online and I could see that most of the numbers were solidly in the middle of the standard range.  So… normal!  For the first time Nurse Heather posted his Immunoglobulins (A, G and M) and all of those measurements were, likewise, in the middle of the standard range.  I texted Jeff to summarize the excellent results and I shook my head at the length of my text, “I should have just called you.”

He texted back, “I guess the only thing wrong is to get it in my head.”

I replied, “Oh, you have that trouble, too?  I think I still worry about you too much.”

“It’s nice to have somebody worry about me.”

 

That night he held up his favorite jeans and said, “See how white the knees are?  That’s from crawling around with Rosie.”  We laughed together over his glorious white-kneed jeans.