Monday, January 14, 2019


Chemotherapy was finished in early October.  Other than nausea, vomiting, exhaustion, weight loss and hair loss, it went quite smoothly.  One step forward.

Radiation was completed in late October.  Other than the tiresome daily schedule for seven weeks and some heartburn and swallowing problems, it, too, went smoothly.  Forward step two.

In early December, we began forward step three.  My cancer doctor began a treatment for me with an immunotherapy drug he had researched.  It was designed not to kill remaining cancer cells  but to strengthen my own immune system to prevent them from spreading.  I had no problems with the first treatment I received.

A week later I began coughing.  Breathing problems are a known possible side effect of that new drug.  So, when I saw the backup cancer doctor a week later, he did not give me the second treatment of it.  Instead, he ordered a short course of antibiotics and steroids.

A week later, when I saw my regular doctor again, I was a bit better.  But he decided not to give me the second dose until he was sure it was not making my pulmonary fibrosis worse.  He did not order any follow up on the medications because my cough was a little better.

The next day I got sick.  I had no fever but the cough was worse, I was short of breath, and too weak to do anything active.  The short course of steroids had jacked up my blood sugars way too high. For some unknown reason, I had taken a big leap backward!

My primary care doctor developed a sliding scale of insulins to try to control my blood sugar levels.  My lung doctor showed me the shadows in my chest X-ray and gave me a longer course of a stronger antibiotic and more steroids.  The cancer doctor asked himself aloud, “Is this a fluke or is it related to that new immunotherapy drug?”

The one thing they all agreed on is this: “You are sick.”  But why? And from what cause?  They do not know but have mentioned pneumonitis, viral pneumonia, or some bacterial infection.

In the midst of this dilemma we got a phone call from the long-term care facility where our names are on the waiting list: a room was available if we were interested.  Was this some kind of an omen of what lay ahead?  We trusted our instincts that one room would be too small for the two of us, and we declined.

Then, to push my progress back even further, we received a sizeable bill from the hospital.   Through all this lengthy adventure in the health care system, this was the first bill we had received.  My Medicare and Medigap secondary insurance had covered everything.  Bruce did some extensive research in my online insurance records and discovered it is hospital error!

I’m trying to think optimistically that the current antibiotic is helping me feel better.  But I’m eager to read the next chapter of my ongoing saga of “Surviving the Healthcare System”!  Will I be going forward or back?

13 Jan 2019 - mshr