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.