Guessing Games

There is a thing that people do in oncology waiting rooms.  Often oncology patients have a companion along for their doctor visits so everybody looks around the waiting room guessing which of each pair is the patient and which is the companion.  I remember doing this at the cancer center at Aria one time.  I noticed a young man - he couldn’t have been more than 30 years old - with a deer-in-the-headlights expression and a young woman gripping his arm and leaning into him.  I recognized Jeff and me in their body language and I could tell he was the patient.  At Penn’s Perelman Center it is even easier to tell which is which because one in each pair is often bald or masked and gloved.  Sometimes the game is challenging in elderly couples when both look frail and sickly.

As we waited in Dr. Porter’s waiting area on Friday, we chatted with a couple of women.  One of them had spiky, possibly new, hair and Jeff and I both guessed she was the patient.  As we talked with them, we discovered we were wrong; it was the other woman who was the patient.  Before we had a chance to give them a brief history of Jeff’s illness, the lab technician came out and called, “Loux!”  Jeff hopped up and went toward the door of the lab.  As a testament to how well Jeff is doing and how hale and hearty he looks, the woman evidently guessed us wrong.  I heard her say, “Oh!  I thought it was her!”  We later related this to Dr. Porter who was appalled that the woman spoke loud enough for me to hear.  I just laughed.  I knew Jeff would get a lot of mileage out of that one!

While we were in the waiting area, a woman came out of the lab sporting two bandages.  Jeff commented with an “Ugh!  They had to stick you twice?!”  The poor woman reported that they needed a lot of blood and her vein didn’t cooperate after several vials were drawn.  So, yes, they had to stick her in the other arm.  She was disgusted.  Jeff admitted to a vanity I was not aware he had.  He said he rips off the bandages before we leave the office, “So that people don’t know I’m sick.” 

Jeff has fewer side effects to report these days.  He did report his gag reflex has become sensitive again so that coughing brought on vomiting one morning last week.  He also asked about the hot flashes he’s been experiencing.  Dr. Rager said that she doesn’t know why it happens but some BMT patients report having hot flashes.  Dr. Rager was keen to check Jeff’s legs since we’d had to call last week to report some pretty serious swelling in both legs.  When she pressed on his shins, it took several seconds for the depression to level out again.  She was glad when we told her it had improved quite a bit and she said she would discuss with Dr. Porter the possibility of doing an ultrasound of the legs.  Later, she and Dr. Porter decided on urinalysis instead.  Dr. Porter said there didn’t seem to be any reason for the swelling except the steroid taper.  And he said “no more steroids.”  Yahoo!  In two months they will begin to taper the Cell Cept (immunosuppressant). 

 

It is Jeff’s wish to be told he doesn’t have to see Dr. Porter for six months – or more.  Dr. Porter said, “We’ll see you in six weeks.  No, let’s make it two months.” 

Jeff hinted that was too soon for his liking and said, “You never answer this the way I want but I’m going to ask it again anyway.  What are my chances of having a recurrence?” 

Dr. Porter paused, then told Jeff that it is important to monitor him for two years because 80% of relapses occur in the first two years after transplant.  He said, “We’re at 16 months.  You’re doing well and we want to keep it that way.”  And, of course, we know that there is no definitive answer to the question of whether or when there will be a relapse.  It’s a guessing game.

The results of Jeff’s cytogenetics (chromosome) study, done last visit, were good.  There are no mutations in his cells - no 5q- deletion - no mutations!  Jeff’s donor’s marrow continues to make good blood.  We learned at Gilda’s Club last week that some patients seem to get their donor’s allergies which may explain why Jeff had no spring allergies this year (his typical allergy season) and, instead, is suffering with some fall allergies.  We’ll have to ask his donor about that.  Speaking of his donor…

This week we heard from Joanne, the donor-recipient matchmaker at Dr. Porter’s office.  She was sad to report that Jeff’s donor wants to remain anonymous.  We can still write but she declined to let her identify be known.  We understand.  Our gratitude for her gift far outweighs our disappointment over not being able to make a more personal contact.  Hers is a gift that keeps on giving. 

I am happy to give an update on Team Bist du Stark and The Dude Hates Cancer fundraiser.  Team Bist du Stark raised $2,300 for the Leukemia and Lymphoma Society.  Thanks to the bowlers and to all who supported our young folks in their efforts.  Many, many thanks!