“You’re Not Crazy After All”

As she read the symptoms and details, the picture and statement seemed to come clearly.I could finally say to myself:

“You’re not crazy after all.”

More than three-and-a-half years into the odyssey of battling heart problems and an odd assortment of issues ranging from dryness, dizziness to bruises that never heal, the pieces seemed to fit into an understandable puzzle.   All those things I have been telling doctors that seemed to go unheeded, for the most part, and sometimes just ignored, now fit into the puzzle.

Biopsy results from a colonoscopy that I had just a day before I began seeing a cardiac surgeon had yielded a surprising result. They found some polyps in their probe into my colon---five to be exact---one large enough to raise some eyebrows and force them under a microscope for further review.

I got an almost frantic call from a doctor saying it appears as though I have an amyloid.  Had never heard the term and the strangeness of the prognosis seemed of relative unimportance to me.  After all, I was preparing or in a waiting game, to deal with much more significant issues----specifically leaky heart valves and the real possibility of significant heart surgery.  I was in a life-changing process, so what’s the big worry about something I’ve never heard of?

In searching for details about an amyloid, Goggle had yielded little that meant anything or translated into something discernible. Yes, it’s rare, very rare, and has something to do with proteins in the bone marrow.  What’s the big deal?

A few days passed.

My case was referred to the Huntsman Cancer Institute, a specialized hospital for cancer research near the University of Utah Hospital, where some rare cancer issues are dealt with.  My late friend Gordon Daley had been a regular there for 10 years, before the effects of Agent Orange had led to the end of his physical life.  My cousin’s son, Derek Maxfield, had also undergone leukemia treatments as a boy and grown up and now is one of the state’s most successful businessmen.  Derek and Gordon inspired me, but their courage was something I could admire from afar.

I have great respect for Jon Huntsman Sr. and his donation to this hospital for those rare cases.  But I would only write about such things as a journalist, never having to worry beyond that.  It is a hospital I would never have to visit as a patient.

After the Huntsman Institute called a second time, my wife Cindy, a very skilled nurse manager who supervises nurses at the Neo-Natal Intensive Care Unit (NICU) at the University of Utah Hospital,
went to the Mayo Clinic online for further details.
The Mayo Clinic’s explanation of amyloid, shed light, and seemed like it profiled things in a way, nothing ever had before.  To use a phrase key to my Mormon faith, it was revelatory.  It was as if the heavens had opened and there was light and understanding. 

Signs and symptoms of amyloidosis may include:

• Swelling of your ankles and legs.  I sometimes have indentations in my legs of two inches after wearing socks.

• Severe fatigue and weakness.  Yes that short walk of 20 yards is hard and I deserve to have a handicap sticker and park close to the door of the store, despite how healthy I may appear.

• Shortness of breath.  I’m really not in that poor a shape.  I used to be able to run miles.

• Numbness, tingling or pain in your hands or feet, especially pain in your wrist (carpal tunnel syndrome).  No that numbness in my feet isn’t due to sitting wrong.

• Diarrhea, possibly with blood, or constipation.  Hardest symptom sometimes to deal with.  Always on guard in public, always.

• Feeling full quickly when eating and significant weight loss.  Those 10-15 pound weight swings in two days do have an explanation and it isn’t because of some miraculous fat burning pill.

• An enlarged tongue.  Nothing quite as awkward as dealing with dry mouth, when it comes on with little warning, when you interview others for a living.  Lifesavers in the pocket to generate saliva are always needed.

• Skin changes, such as thickening or easy bruising, and purplish patches around the eyes.  Some days my skin is drier than the Sahara and all that purple isn’t just because I take a baby aspirin every day.

• An irregular heartbeat.  Easiest symptom to profile.

• Difficulty swallowing.  Now I know why I’ve almost choked on rice twice in the past few weeks and sometimes get three bites into a meal, before I have to stop.

As Cindy read further, about how amyloidosis can impact the heart and then the nervous system, I thought she was reading from my medical chart.

She then read about how the disease can impact the nervous system.  It was the best explanation I could have given to those bothersome questions doctors ask about symptoms and what is going on.

Again the information was a breath of fresh air.
 
Descriptions of how the disease attacks the organs and a wide range of treatment options from chemotherapy to stem cell transplants, still could not take away the comfort of feeling like things fit, like there is a pattern I can deal with and understand.  Even its link to Alzheimer’s in some cases does not change that feeling.

So I begin this walk into the darkness of an unknown disease, and potential ways to treat and deal with it, recognizing there is no known cure, but feeling much better about myself and sure I can deal with lies ahead, with God’s help.

I’m not crazy after all.