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.