My Mother’s Last Weeks

Madolyn, my 98 year-old mother had been treated for her indolent B-cell lymphoma for about four years, first with neck and mediastinal irradiation and then retuximab.  

To digress from the central story, we were all together for Christmas 2009 in our home on the Oregon Coast when Mom confided to my wife, Beth, that her eyes had become increasingly more swollen each morning.  She now could not see when she awoke.  After she had been up for a few hours the swelling disappeared.  I found that she had prominent lymph nodes in her neck and above the collar bones.  It seemed likely that the mediastinum was similarly involved, and that she had a Superior Vena Cava Syndrome.  This is caused by lymph nodes compressing the veins  in the center of the chest.  A CT scan confirmed this.  She had irradiation and retuximab and the nodes grew smaller.  The neck and facial swelling subsided.

Then all went well until about four years later, when in August of 2013 she noted an increasing mass of lymph nodes in her right upper neck and a mass in the back of her throat on the same side.  She reluctantly consented to another round of irradiation.  The therapist carefully constructed a hard plastic mask that fit over her face and neck.  The x-ray beam was then directed upward from the front of right side of her neck to the mass on her palate. The irradiation was was finished in early October.  

Adamant that she would accept no more treatment, she signed up for hospice care in early November.  In mid-November she complained of fatigue, and she decreased her activities.  On November 16^th she did not get up from bed and had become very somnolent.  She was worse on Monday, and Beth drove to the Coast to help care for her.  She was bedfast and unresponsive.  Beth activated hospice care and a team worked with the family.

   

We had our Thanksgiving meal at the Coast, and Mom was in her hospital bed near us as we ate.  She was unresponsive.

  In early December although still bedfast, she responded to voices and was able to identify us.  She asked “what happened?”.  I had to tell her that I did not know.  She then lapsed back into sleep.  She awoke for sips of water, coffee and custard.  Her somnolence continued and by early February she was unable to take any food or nutrition.  She died February 6^th.

A few weeks later I was making hospital teaching rounds, and an eighty-eight year-old woman was discussed.  She had had total cranial irradiation for lymphomatous meningitis.  Approximately a month after her treatment ended she became somnolent and then unresponsive.  She was now recovering. Her oncologist discussed her case with us and confided that he thought that she had had the syndrome of post-irradiation encephalopathy or somnolence.  My colleagues with me on rounds had never heard of this syndrome, and I had not either.

Post brain-irradiation encephalopathy is more commonly seen in children because they more often than adults get brain irradiation for their leukemias.  It comes on suddenly four to six weeks after radiation therapy.  After a variable time, most  patients recover.   My mother was frail and her prolonged coma made her more frail.  It was not possible for her to recover.