John's Story

Lori's Poem
A Brother-in-law's Tribute
Eulogy
Lang Family Album

This page is dedicated to a brave man named John Lang and to his wife Carol. Together they fought a 10-year battle against a terrible disease. With love undiminished, they continued to share with family and friends.

Carol wrote John's Story on May 16-17, 1998:

In Oct. '87, John began to have trouble with his hands.  He did a lot of
paperwork at the time and he was having trouble writing, due to stiffness,
weakness and aching in his hands.  Our family GP sent him for tests for
rheumatoid arthritis, which came back negative.  After a month or so the
problems with his hands seemed to clear up, so we forgot about it until
Jan. '88, when his left leg started giving out underneath him.  He was
still involved at this point playing, coaching and refereeing hockey. 

In Feb., his leg gave out while he was playing hockey, and he admitted to me
that he was afraid something was very wrong with him.  Up until that point
he had kept me in the dark about a lot of things, choosing to under play
the symptoms.  He told me he had fallen several times at  work, and that
his hands were bothering him again.  He also started having severe
headaches at this time.

Our GP referred John to a neurologist (if you can call him that!) in
Victoria, B.C.  There he had a CT scan and a lumbar puncture.  We were then
sent home with a diagnoses of MS, and John was placed on steroids.  By the
time we got home from Victoria, 2 days later, his speech was greatly
affected, his vision doubled, and both legs were impaired.  I'm still so
angry as I write this.  Perhaps without that wrong diagnosis, things
wouldn't be where they are today.  The progression of the symptoms
continued to worsen but at a slower rate thanks to the steroids.

In May of '88, I heard of a study being conducted at U.B.C. (University of
British Columbia).  At my insistence, John was referred to Dr. L.F.
Kastrukoff at UBC.  He took one look at John and said he was sure that it
wasn't MS, he immediately ordered a MRI, and admitted him to UBC Hospital.
The search for the cause of his symptoms was finally on.  John was in the
hospital about 5 weeks.  I was able to stay with him in Vancouver.  I
stayed in residence on campus.  Every possible test was taken, every
possible scan.  Nothing showed up.  I'm sure they suspected the diagnoses
at that time, but were unable to find the underlying cancer.  John was sent
home in mid July, so he could wean off the steroids.  After he was
completely weaned off, he was to be back in Vancouver for more testing.  By
the end of Aug., when he was almost off of the steroids, he crashed hard.
All of a sudden one morning, he wasn't able to get out of bed.  Up until
that time he'd been able to get around slowly with a walker.  He couldn't
dress himself, he was vomiting, and his vision and speech were much worse.
A large lump appeared on his neck.  He was sent back to UBC Hospital by
ambulance.  After a few days of testing, he was sent to Vancouver General
Hospital for surgery.  The tumor was on the lymph, but it was wrapped
around the main artery, so it was a dangerous surgery.  The cancer proved
to be a squamous cell cancer, that had metastasized to the lymph glands.
The search was then on to find the original sight.  Biopsies were  taken of
everything from the nose to the lungs.  The original sight of the cancer
turned out to be on the back of his tongue, not even visible to the naked eye.
After the diagnosis of the cancer, the paraneoplastic syndrome diagnoses
was given.

The next step was a plasma exchange at VGH.  That seemed stop the downhill
progression.

John was then sent to the B.C. Cancer Control Clinic, also in Vancouver,
for radiation treatments.  He was in the hospital there for the months of
Oct. and Nov. '88.  He didn't tolerate the radiation well.  He was
extremely nauseous.  Physically and mentally he deteriorated quickly during
this phase.

At the beginning of Dec. '88, John was sent home via ambulance, to our
local hospital.  In March '89 he was transferred to the extented care unit
in the hospital, where he remains today.

Gradually he improved to the point that he was able to get around the
hospital a little in his electric wheelchair.  His mind also improved and
he remained mentally alert most of the time.  There were good days and bad
days.  Somedays you could understand him very well, and other days not at
all.  He couldn't sit up by himself, but with an extra back support in his
wheelchair, he could sit up all day.  His friends at work all chipped in a
bought him a computer with a special keyboard.  He was able to use it, and
until recently was even able to surf the net.

Four years ago, in Sept '94, he was unable to breath without oxygen, and
everything he did was extremely tiring.  A cardiologist was called in, and
after a series of tests, it was discovered that he was in heart failure.
They still have no idea what happened, he had never before had any heart
problems.  They say it could have been a virus or a complication of the
paraneoplastic.  At the time they told me that the only hope would be a
transplant, but that they wouldn't recommend him for one because he wasn't
strong enough with all his other problems, to handle the surgery.  I was
also told that he would probably not live a year.  He was put on blood
thinners and directics.  He improved and has been quite well with the
exception of several bouts of pneumonia, for the last 31/2 years.

Six weeks ago he started to fill up with fluid, he could no longer talk at
all, he would choke until he passed out and stopped breathing, his mind
would go completely and he wouldn't know where he was and then he would
panic.  He couldn't even hold his head up.  He would drool constantly.  It
was all very frightening to see.  The doctor told me to make sure all of
his affairs were in order, and 2 of this nurses told me to call his sister
in, they were sure he wouldn't last another week.  They doubled his dosage
of diuretics, and added a huge dosage of another diuretic.  He has seemed
to be greatly improved in the last 10 days.  His mind is back most of the
time, he's holding his head up and he's lost the fluid.  He still has his
spells of not knowing where he is, and he still panics when that happens to
him.  He says that he still feels strange and that he thinks he going to
die soon.  He has requested no new meds, no new doctors, and no more tests
from this point on.  There is a no code on him at his request.

I don't blame John for the way he feels at this point.  He's put up a
wonderfully strong struggle for 10 years.  He says he's tired and that he's
ready to die now.  I'm finding it hard to deal with though.  I can't
imagine life without John.  Sick or well he's always been there.  I hope
for his sake, that when the time comes I can let him go peacefully.

John died on Aug. 25, 1998.