BMT Day +98 The straw that almost broke Teri’s back

Yesterday, because of continued right-sided pain, causing Teri to yelp aloud, she underwent a CT scan to augment the ultrasound from the day before.  As has been her pattern, there was good news = no abscess or nephrostomy tube leakage – and bad news = a new infiltrate in her left lung, likely an infection.

The oncology team proposed that she undergo a bronchoscopy (a scope passed into the lung) to obtain a diagnostic sample today.  Two pulmonary fellows came by to do the consult but she turned them away.

This was the straw that nearly broke Teri’s aching back.

Recalling her recent debacle from an endoscopy (stomach scope) that led to a complication and a horrifying stay in the MICU, she was frantic about triggering another downward spiral: 

“Why is there always another complication around the corner?”

“My body is no longer my own, complications and doctors control all of it.”

“I can't go through another procedure.”

“I refuse the test.”

“I want to stop all treatment!”

Yesterday, she wouldn’t walk or eat.

I called her primary oncologist and asked whether the team could modify their approach, make their best judgment as to the potential bug and change in antibiotic therapy without the bronchoscopy, and first see if she responds, especially since she was not that ill.  Her oncologist was agreeable to a compromise. 

It gave Teri a sense of control, of relief, and a chance to continue her recovery.

Today was a better day. 

Teri walked 1840 feet, another milestone.  She ate more though nonsustaining amounts of food.  She asked for the first time to be wheeled outside the ward down to the cafeteria where she ate all bundled up, masked, NJ tube protruding, and hands gloved.  She is a trooper.  Her CMV viral particles are now < 1000 – under control! 

She started on an experimental antiviral CMX001 to tackle the relentless BK virus that has caused 2½ months of continuous bleeding, bladder cramping and suffering.  Of note, this novel therapy was proposed by the head of nephrology, an expert in BK virus, and required emergency FDA approval.  It has a good side effect and drug interaction profile.  It just so happens that he is a close friend of Roy and Bobbie, our down-the-hall neighbors in Chicago and good friends – a mere 2 degrees of separation away – small village. 

However, challenges continue.  Teri’s NJ tube got clogged and will be rotorootered tomorrow.  Her kidney function worsened slightly.  Her pleural (lung) effusion (fluid) and ascites (abdominal fluid) and leg edema are worsening partly due to the excessive fluid load required to administer foscarnet.

Jeanine (niece from CA) came last night for the next shift.  She is an experienced and insightful cancer support person having done so for her cousin and her mother-in-law.  She said exactly the right things to Teri.  She is not afraid of cancer.  She is not afraid of end-of-life discussions.  She is great to have here.