Neurological Oddities

One of the side effects of my chemotherapy is called peripheral neuropathy.   This gives me some interesting symptoms, but, annoyingly, also intensifies my natural clumsiness.  The neuropathy gives me a sensation of stroking sandpaper, even when I stroke silk or a baby’s skin.  My fingers, toes, and sometimes whole feet often have a sensation of pins and needles.  I have developed a technique to button buttons – buttons now require premeditation.

When I am in total darkness, or have my eyes closed to shampoo, I need to put a hand on a wall to know which way is up.  I asked my wonderful oncologist if the flawed proprioception, too, was a symptom of neuropathy, and she said that it was.

I have no idea if the next two oddities may be peripheral neuropathy or some other neurological symptoms.  One of them has been with me for more than a year; I love it.   I call it the heating-pad effect.  When I lean back against a chair or bed, I feel a comforting warmth.  The first time I felt it was at Betsy’s house; I thought it strange that Betsy would have heated furniture.  She said she didn’t.  In summer heat I don’t notice it.  Maybe I don’t lean back so often in summer.

The newest symptom is oddest to me,  I hear bells when I shake my head vigorously from side to side, as I do to show dissent.  The bells are high pitched, like jingle bells, but more musical.  I’ve noticed this symptom for about a month.  I wondered if the sound might be the loose screw.  The mind [brain] is, indeed, a strange and wonderful place.

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

A Quiet Night at the Park

Tonight when we went to the park, we saw again two baby rabbits, the size of my fist; in the middle of the road.  They leave the safe, tall, grass around the apple grove, dart out into the road and freeze.  A Red-tailed Hawk hangs out in the park, and some cars speed in or out on the road.  We always honk and shout at the rabbits, who then dart back to the safety of the tall grass.  The apple trees nearest the park are almost hidden by tall bushes.  The deer have eater the tree branches there so that the bottom branches of the trees are flat.

As we drove to the upper pond, we saw only one car in the parking lot.  Two deer were browsing up the hill behind shelter one.  The picnic table where we sometimes sit was piled with towels and clothes.  We tactfully took our canvas camp stools  down to the green grassy peninsula we think of as goose beach, some yards from the table.  The couple, who had been swimming near the shore, swam over to the pier on the dam across the pond, climbed out and snuggled together on the pier.  We thought they might have been skinny-dipping. 

 

Our interest, however. was mostly directed at the (now) eleven geese pecking away at the broad-leafed weeds and clover in the grass  They allowed us to set up our stools within four feet of the flock. They pecked all around us, oblivious.  Suddenly they waddled down to the pond’s edge a couple of feet away and there began to groom themselves, carefully coaxing fat from their bodies down the feathers with their beaks.  They seemed to lie near each other in pairs, excepting the odd goose.  [I read that Canada Geese mate for life;Ox asks how anyone would know that.]  After what seemed like half-an-hour of grooming, they returned to feeding. 

Meanwhile our favorite aquatic mammal swam across the pond from south to north.  We’re pretty sure she isn’t a beaver, as there are no piles of sticks at the pond's edge and also because she hasn’t been relocated by the park staff. We suspect that she's a muskrat.

The bullfrogs were thrumming, their low music and the green (rubberband) frogs provided counterpoint.  The  fireflies lit up randomly, making magic of the dusk, though there are no longer enough of them here to be light raining upwards.

The geese, one by one slid into the pond and made for the fenced-in beach, where they usually spend the night.  We took our cue from them and packed up our camp stools, trudged to the car, and saying peace and goodnight to all the animals in the park, including the young couple entwined on the pier, drove home,  tired and happy..

Careening Around Cancer - A Surreal Odyssey: Prelude

I awoke one morning in 2016  to find that my voice had risen at least half an octave.  I disliked this whiney six-year-old voice.  I had been there and done that as a whiney six-year-old in a stoic family.  My dislike of the voice did nothing to change it.

About this same time food was becoming difficult to swallow.  I had a barium swallow test.  Barium is opaque to x-rays.  The victim is given barium-laced drink and foods of graduated difficulty to swallow, while the x-rays take pictures.  I had a narrowed esophagus.  A gastroenterologist stretched my esophagus and invited me to an explanation of his findings. 

At the same time, my wonderful PCP, worried about my weight loss, arranged a PET scan; the PET scan showed that the 14 ½ year old breast cancer was now metastatic to some vertebrae and to a mediastinal (between the lungs) mass.  Of course, I went to the explanation of the PET scan and returned to my favorite poisoner for chemotherapy.  I forgot about making the esophagus appointment

The chemotherapy made me bald again - no big deal – been there, done that.  The Oncologist’s organization gave me some colorful hats and I was happy to read or doze in a reclining chair for a few hours each week.  The only troublesome side effect of Taxotere was that it damaged the peripheral nerves in my hands and feet; stroking silk feels like stroking sandpaper.   I have become even more clumsy and my hands and feet tingle, not unpleasantly, most of the time.  I use pliers to open twist off caps.  I continued with my Oncologist until the organization that had head-hunted him from Martha Jefferson fired him, a nasty ploy, I thought. 

I returned to Martha Jefferson and found a knowledgeable and sensitive new oncologist. My hair grew back, on a gentler, but effective regimen. After happy months at Martha Jefferson, I signed up for a clinical trial at UVA.  I read in C’ville  about a new bi-specific, hybrid, antibody, one part of it attached to killer T cells, and the other to cancer cells, creating a bridge.  Intrigued with the ingenuity of the idea, I looked up the researcher in the UVA phone book and called; I expected that an efficient secretary would answer and tell me to go fly a kite.  I was nonplussed when Dr. Lum’s answering machine answered.  I hesitantly offered my services as a guinea pig.  

The next week a doctor who ran some medical clinical trials at UVA called me.  He said that Dr. Lum’s idea was not yet ready for trial, but he had a monoclonal antibody that was.  I interviewed him later and agreed to join the clinical trial of Margetuximab.  The end point  of the study was progression of the subject's cancer or the subject’s death.

For me the trial involved going to UVA’s Emily Couric Cancer Center for infusion weekly and undergoing various scans every so often.  I went faithfully to my appointments, despite the dreaded UVA hospital parking garage.  I continued to lose weight.  My blood pressure had been high a year ago and I took Lisinopril for it. As I lost weight my blood pressure plummeted.  I remarked to the doctor running the study that I must consult with my PCP about stopping the blood pressure medication.  The doctor running the study made clear to me that he was now my doctor and that I should stop taking Lisinopril.
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On December 31, I woke up with a voice that was practically only breath.  Ox said he wanted to go to Lowe’s and Kroger.  I asked if I could come along;  I wanted to buy food like eggs, jello and ice cream that I could swallow easily.   I’d read while he was in Lowe’s and go with him to Kroger.  As we walked into  Kroger I started gasping for air and emitting a choking cough.  Ox got me sitting down at Kroger’s little coffee shop where I half lay across the table gasping.  A kind, concerned worker came over to us and asked if she could help.  She stood by as I continued to gasp.  After about 15 minutes the fit subsided.  The kind worker came with us to help me into the car.  Ox thanked her and offered her a twenty dollar bill.  She demurred, saying she was “paying it forward.”  Ox asked me if I’d like to go to the emergency room.  New Year’s eve in the emergency room sounded ghastly.  I said I just wanted to go home.

The very best thing that I have learned from this return of cancer is how truly kind. People can be.