Careening Around Cancer – part 2

The story that follows seems like a blooming, buzzing confusion* to me now; everything happened so fast.

I saw the nurse practitioner at my next visit to the UVA study.  When I told him about gasping for air, he asked to go to UVA’s emergency room and have him paged if it ever happened again.  I weighed in at 97 lbs.; the doctor running the study said “Eat more calories.”  This seemed flip to me.  I hadn’t weighed 97 lbs since I was 10 and  I was scared.

That Saturday I had another spell.  We drove to the ER.  By the time we got there the gasping had stopped.  The emergency room paged the nurse practitioner; it was a Saturday no one answered.  Because I lacked symptoms that needed urgent care, we waited a while.  An efficient young ER doctor took a detailed history.  Later he told me I needed to see my primary care doctor and an ear nose throat doctor urgently.  Monday I made the appointments

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That week the otolaryngologist (ear, nose, and  throat doctor) looked down my throat with a camera through a nostril (gag) and said that she thought I need a tracheostomy as soon as possible and a feeding tube.  She said both my vocal cords were frozen shut.  She said that she didn’t know why the cords were frozen, possibly the nerves that innervate the cords were damaged as they passed through the mediastinal (between  the lungs) cancerous mass. I was due to have scans that week for the UVA study.  She suggested that I request an MRI of the head, to help me decide if I was losing my information, or wanted to  have the two operations.

She also asked that I get a barium swallow test on Friday, January 12.  In this test I was to be given foods that were progressively more difficult  to swallow.  The foods were laced with barium, which is opaque to x-ray.  I flunked the test.  I could not even swallow yoghurt.  My esophagus was shown to have a diameter of 2 millimeters.

I called the doctor in charge of the study and asked for the MRI.  I opined that if he couldn’t see his way to ordering one that Dr. Struble at Martha Jefferson, my old oncologist, would be willing to do so   He ordered the MRI.

On Monday, January 15, starting at 8:20 am.  I had a whole body bone scan, a CT scan, and an echocardiogram, standard for the study, and  at 6:00 p.m. the MRI of the head.

On Tuesday the 16^th, I had my regular appointment with the director of the study  He told me that the MRI of the head showed several new cancers of the skull; these qualified as progression of the cancer and that I was no longer in the study.  He opined that I had about two years to live.  He asked that I return the next Tuesday for a final blood draw.  I made an appointment for 1:40 that next Tuesday.

On Wednesday the 17^th the otolaryngologist called to ask that I go into the hospital that day.  She would insert a tracheostomy tube on the 18^th and a gastroenterologist would insert a feeding tube on the 19^th  I said I would be there.  I was to spend the first night in intensive care because that was where a spare bed could be had on short notice.  I had the surgery the next morning and was moved to a surgery unit after the operation.  That night I was visited by the gastroenterologist, who told me he’d operate the next morning to insert a feeding tube, which he did.  The nurses at Sentara Martha Jefferson were entirely wonderful, showing me how to use my new bionic parts.

I went home from hospital, a little scared, on Monday the 21^st.  A home health nurse, new to the firm, came by.  She filled out a form while reclining against the bed pillow where I sat.  Later in the week an older and wiser nurse came by and I asked her to make herself our designated nurse.  She  did so.

During my absence, the home health care people had delivered lots of Osmolite, the substance that is to be my diet for the rest of time.  Osmolite is a liquid diet that has all necessary ingredients to sustain life It is a grayish liquid with no scent.  It comes in 8 ounce milk cartons.  Other necessary and unnecessary supplies were also delivered:  There were cleaning kits for the tracheostomy tube, funnels to get the Osmolite into the feeding tube and many other wonders. 

Since then, my life has been about taking care of all these supplies and myself.  I think of it all as doing my chores.

The tracheostomy tube and the feeding tube are, for me, necessary to life.  They are also messy and inconvenient.  However, when Ox lures me to the park, as he does most nights, and when the children, grandchild, and dogs, come to visit, and when I see my siblings, and  hear from loving Quakers, and when I reminisce about  my strange and happy life, I am so glad that the tracheostomy and the feeding tube have given me a little more time.

* blooming, buzzing confusion  - William James on the world to a newborn in Principles of Psychology 1890