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.