Radioactive

We spent all day at Moffitt on Wednesday.  Robin was scheduled for blood work, a PET scan and finally a visit with his hematology oncologist.  You know the drill - I furtively grab a coffee and a bit of breakfast and he drives to Tampa having had only water.  It makes a hungry day for him.

My job is to hang onto his wallet, his reading material, his extra sweater, his phone.  They whisk him away at each station and I wait to move on to the next one with him.  What it does allow me to do is observe the other players at this prestigious cancer center.  I realize that we have been frequenting this place for more than six years.  It began with testing to determine eligibility for the clinical trial and has come to this phase - monitoring.  This is certainly much easier than continual treatment, surgery, recovery, testing.  However, it does come with its own level of stress.  Is this the time that they will discover that the tumors have grown?  Will the tests uncover a new enemy lurking within?  Will they tell us that they have done all that they can do?

But, we have become comfortable with the routines of the hospital.  We know exactly where to drop the car (various valet entrances can be confusing).  Robin has been so often that the front desk staff, the check-in attendants and the staff at the lobby Starbucks recognize him readily.  We are familiar with the various clinics - blood draw, imaging, cutaneous, hematology.  We pass the other centers - endocrine, head and neck, cervical, colorectal, breast - too many to list.  When finally we arrive at imaging, Robin is taken away and I am told they will return him in 2 and 1/2 hours.  I settle into my chair, check phone messages, open my book, watch HGTV on the television screen.  (They used to play the local news, but found it too distressing for the patients and their families!)

But I am distracted by a bell.  In the adjoining infusion clinic, patients have reached the end of their chemical journey.  The patient rings the bell and staff, family, friends and onlookers celebrate another victory.  It is a giant bell,  like a ship's bell, and most clang it with gusto.  It is a joyous sound and everyone present applauds and cheers.  Today is an especially good day because the bell is rung six times during my time there.  I am buoyed by the optimism.

I turn my attention to my fellow waiting companions.  They are, as always, a cross section of our society.  They are mostly quiet, polite, reserved.  I have observed them all and others like them for many years now.  Today, there is only one cranky family.  There is almost always one.  They are grumpy, impatient, complaining. The patient is wearing a F*** Cancer t-shirt.  I can see that they are unhappy.  I want to tell them that a bad attitude will not help, but I don't.  I know that moving with a positive outlook is the only way to navigate this place.  Thankfully, most people who are enrolled do just that.  Families huddle together and share pictures, messages, reading material.  They make plans for future events.  They smile and even laugh a little.  The volunteer staff breezes in with snacks, puzzles, games, art activities - anything to lighten the mood and distract you from your business of the day.  The staff greets each patient with good humor and a little playfulness - "Come with me.  We have a room for you!"  The cheerful patient is also wearing a t-shirt.  This one says Stand up to Cancer.  You know the one.  I like that one much better.  The attitude is right.  Don't curse this disease.  Use your resources and fight it with determination.

Finally, Robin reappears.  We find the hospital cafeteria and get him something to eat.  It is mid afternoon and we still have several hours before meeting with the doctor.  The improvements in this facility over the last six years are remarkable.  It is arranged like a little bistro with foods from all over the world.  A little lunch lifts our spirits, but we are anxious to meet with Dr. Leidy and find out what comes next in our battle with lymphoma.  We are ready to proceed.

We present ourselves to the staff at the lymphoma clinic and the nurse checks Robin's vital signs.  We are led to an examining room and wait,  uneasily.  What will the images reveal this time?   Dr. Leidy comes in with copies of the reports from the morning.   It occurs to me that Robin never had the opportunity to ring the bell at the end of his infusion treatments.  When you are in a clinical trial, the dosing continues until your body can no longer tolerate the drug.  When Opdivo finally was approved, the normal course was set at six infusions.  Robin had 22.  They then simply said that was enough - no bell ringing.                                                                                  

But today, Dr. Leidy tells us that the marker tumors have shrunk!  We will not begin treatment.  She dismisses us warmly and tells Robin to continue with his scheduled skin surgeries in the cutaneous clinic.  She will see us again in six months.  Another Moffitt miracle has happened.  Let the bell ring!