ER Docs and Teladocs

Jeff spent some time in the ER.  It was the mock ER at the Please Touch Museum in Philadelphia.  Dr. Rosie listened to his gut with the stethoscope and then left her patient to attend to other things. 

Along came another health care professional (a six-year-old girl on a field trip from St. Dorothy’s) to take Jeff’s blood pressure.  The toy BP cuff didn’t fit around his upper arm so Jeff suggested she put it around his wrist.

“It says zero so it will have to come off,” she informed him.  She reached in her doctor’s bag and retrieved a pair of large plastic scissors.

He said, “That looks like it’s going to hurt.”

“It will only hurt when I snip,” she assured him.

Thank goodness for good medical care!  And for the best medicine - laughter!

When Jeff realized that he was going to have to go to the family doctor for a sinus infection, he was not too happy.  Combating “Doctor Fatigue” continues to be a challenge.  I remembered that Rider University now offers a Teladoc service as part of my health insurance plan and I suggested he call a doctor (at 9 p.m. on a Friday night) rather than trying to get a Saturday morning doctor’s appointment.  He was able to pick up his antibiotic at the pharmacy first thing Saturday morning without spending time waiting for an appointment and sitting in the doctor’s office.  Done.  Time for a nap.

To our list of firsts we can add a few food items:  ordering oatmeal out (fighting that high cholesterol), escargot (at Rat's, Grounds for Sculpture) and yucca (at a Peruvian restaurant).

A Big Snow, a Big Win and a TV Doctor

The Great Blizzard of 2016 left us with over a foot of snow, over two-foot drifts, and extreme gratitude for our snow blower!  After three hours of snow blowing on Day Two, Jeff took a nearly three-hour nap - his rest no doubt enhanced by the blessings our grateful neighbors sent his way:  the sign of the cross, the reverent bow, the “Thank You!” shouted over the roar of the machine.

We have added a couple of firsts to our LuAnn Cahn-inspired list.  On a romantic weekend getaway to Bethlehem, PA, we decided to actually go into the Casino and gamble!  We each decided how much money we would be willing to lose.  I was willing to lose just $1.  It makes me very sad to feel like I’ve been duped out of money - any amount.  Jeff was braver, willing to put up a fiver.  And we decided if we were at break-even, we would bet again but as soon as we were ahead, we’d stop. The machines required a minimum of five dollars to play.  I happily put my $1 back in my pocket.  Jeff played a slot machine (is it called a slot machine if you put in a $5 bill?).  The machine was so glitzy with pictures and messages that we had trouble figuring out how to play. I read the “Help” screen aloud but it was Greek to us.   A kind gentleman nearby pegged us for newbies and told us how to “win big” by betting $3 at a time instead of $1.  Jeff won his $5 back, “re-invested” it and won $402!  Done. 

Another first was to take Rosie and Penny by SEPTA Regional Rail to Philadelphia to have lunch with Aunt Kim.  Penny sat on Jeff’s lap by the window and watched the world go by.  Rosie stood on my legs for a better view and at each stop asked, “Going to see Aunt Kim?”  We counted the stops until we would see Aunt Kim, about 9 more, 8 more...  Aunt Kim met us at Jefferson Station and took us to a wonderful establishment, Burgerfi, where you can get the best hot dogs and burgers!  Rosie took in every detail of the restaurant, danced to the music and thoroughly enjoyed Aunt Kim’s company.  Aunt Kim thought the girls were pretty swell lunch dates, too. 

Last week Jeff told Dr. Porter that he’d caught a 1982 Quincy, M.E. episode in which cancer patients were being treated with gene therapy dispersed through the body by means of a virus.  Sound familiar?  1982 Art imitates 2016 Life.  Maybe you’d call it SciFi?  The problem was that non-patients were contracting that virus and it was deadly!    Dr. Porter was fascinated and took note of the episode number.  (Quincy, M.E. Season 8, Episode 7) 

Dr. Porter believes it may be possible for Jeff to stop the Cellcept (Mycophenolate) immunosuppressant after his April visit.  This is good news since GP Dr. Sullivan believes Cellcept may be contributing to Jeff’s recent high cholesterol, as it does for about 40% of patients who take it.  Dr. Sullivan wants to avoid medicating for high cholesterol because side effects include liver problems and Jeff has had GVHD of the liver.  In any case, he wouldn’t prescribe it without Dr. Porter’s approval. 

Unfortunately, instead of getting a list of foods to eat, Jeff came home with a list of Don’t-Eats.  He is quite forlorn.  He says all his favorites are on the list: marbled beef, ice cream, chocolate, soda…  I tried to focus his attention to an online list showing the foods to eat, including some of his favorites: nuts, apples, oatmeal, beans.   Dr. Sullivan also instructed Jeff to stop his vitamins for two weeks to see whether that takes care of the foamy urine.  All else is good. 

While at HUP, Jeff visited another MDS patient on Rhoades 7.  We’d been following Big Rich’s treatment and condition through his friend, my boss at Rider.  Rich is getting chemo while waiting for a bone marrow match.  Although Jeff had never met Big Rich before, they had a lot to talk about.  Jeff encouraged Rich’s wife, Joan, to take the train into the city and offered hope for a good outcome for Rich.  “Nice people,” Jeff told me. 

Plans are underway for a 5-year BMT Anniversary Party in June.  Nicole and her family will be able to come up from Atlanta for the occasion! 

Happy New Year! Happy 57th Birthday, Jeff!

Just before the holidays a little nostalgia set in which inspired Jeff (with the help of our young people and their various devices) to locate a couple of his childhood friends, Steve and Jeff, now living in New Zealand and Illinois respectively.  It was fun to see how much he appreciated connecting with his pals and to hear him wanting to know more about how - and what - they are doing.  Personally, I believe he needs his own Facebook account.  We’ll see whether I can convince him sometime this year!

Jeff spent some time in his shop creating a dollhouse replica of Kerry and Theresa’s house for our granddaughters.  The adults seem to enjoy it as much as the girls (well, Rosie anyway; seven-month-old Penny mostly uses it as a standing aid). 
  

Note the architect and contractor in the top right corner and the toilet crafted from two dental floss containers, a bottle cap and a piece of card stock (Amy's contribution to the project). 

Lower Level under construction

Happy Birthday to Jeff!  Hooray to Survivorship!

Bushwhacking and Other Firsts

LuAnn Cahn, a former local newscaster and two-time cancer survivor, was the inspirational speaker at a survivor’s event we attended last month.  She spoke about her experience of trying something new every day for a year to shake herself out of a funk.  We are having fun brainstorming potential Firsts and have started keeping a list of Firsts we have tried - including driving down the very narrow first block of Daughter Kim’s street heretofore believed to be off-limits to cars.  We had a lot of laughs and felt very, very bold.  LuAnn is on to something!

Unlike LuAnn, however, we are haphazard about our Firsts.  Thinking of something new to try every day would be far too stressful.  Some things on our To Do List are:  see a kid’s movie without the kids, have a crepe breakfast in Princeton, visit a trampoline park (okay – that one is mine alone) and take a Segway tour in good ol’ Philadelphia.

Inadvertent and unwanted firsts have cropped up, too.  For example, Jeff had a couple of issues that required reporting to his oncologist and dermatologist.  Two appointments that were scheduled for early 2016 were moved up to December – a day apart.  A very large polyp was removed from Jeff’s colon which the gastroenterologist said would have “almost certainly become cancerous.”  This means we are now waiting for the results of a biopsy (we’re not too concerned since the doctor was not).  And – Oh Joy! - Jeff will need annual colonoscopies!

On Friday, barely 24 hours after being under the influence of anesthesia, Jeff took a one-hour drive to the Radnor office of Penn Dermatology.  This was a First; he’s only ever seen Dr. Samimi in Center City Philadelphia but she wanted to see him and she was in Radnor.  A hard, new growth on his forehead, at the hairline, was frozen off.  This visit won’t replace his six-month check-up, however.  It seems April is turning out to be the next “Doctor Month.”

Polyps and skin lesions are both fairly common issues and yet we wonder to what degree the harsh pre-BMT treatments caused or sped up these growths.  We’ll never know, of course.  The diligence required feels a little like whacking back the wild – bushwhacking! 

Jeff and I check on each other frequently.  I’m not sure how he could tell I was feeling anxious last week.  He asked, “Are you worried about me?”  I was kind of worried but it passes.

A milestone – a First of sorts – was commemorating five years since diagnosis (October).  Another will be celebrating five years since transplant (in May).  Jeff has come far and he has many more Firsts ahead of him.