We've gone through a week of hell, a slight cough
precipitating an X-Ray which revealed, as I had expected, an old pleurisy scar
from my college days. But that is just
the beginning.
Ah, those college days when we thought time was a personal
continuum, guaranteed to last forever, and so we did whatever we liked,
reckless things at times. I was studying
for finals in my Sophomore year and the dormitory was ablaze with late night
studying, frequently with the help of NoDoze, strong coffee (or caffeinated tea
in my case) and a cigarette burning from my lips or ashtray. We were on a caffeine induced self-perpetuating
high -- a contest of how long we could stay up, and memorize for those tests,
walking around like zombies and proud of it.
After finals I collapsed and developed pleurisy -- in fact a
very serious case -- and I was brought over to the Brooklyn Hospital, put in a
ward with some twenty other patients, and had a female pulmonologist assigned
to me (unusual in those days). I never
forgot her name as I found it almost comical: Dr. LafLoofy. She tested me for, among other things,
Tuberculosis, and suspected I had some form of it, but never confirmed
though. But the pleurisy was her main
concern as I could hardly breathe and the pain was almost intolerable. I was given dosages of antibiotics or
penicillin, vintage 1960's, and they were even considering drilling a hole in
my back to extract fluid, but it never came to that. The worst pain came from coughing or
laughing. Visitors were told not to make
me laugh and all would arrive with such somber faces that I would immediately burst
out laughing, then howl with pain, as they quickly but still somberly retreated. No more visitors for me.
So I spent two weeks in the ward, while the medications did
their job. My companion most of the time
was Theodore Dreiser's "Cooperwood Trilogy." It seemed like such a perfect piece of
literary work to consume during my infirmary.
When I finally emerged from the hospital, I swore off
all-nighters, took a little better care of myself, but I was right back
smoking, and continued to smoke a pack to a pack and a half for the next 13
years. I had smoked three years before,
so that's 16 years of smoking plus both my parents smoked and our house and car
were always a blue haze of smoke. Those
were simply the days when everyone smoked.
Fast forward to this past week. So, when my slight cough could not be
explained, my Internist took an X-Ray which to no one's surprise revealed that
old pleurisy scar from a half century before.
That being explained, he put me on an antibiotic, but the following
morning he called me to say that he decided to compare my current X-ray to one
taken two years ago as a precaution. He thought he saw a change in that scar
and thus a CAT Scan was ordered. He
called the next day with scary results; I had an 18x18x23mm mass in the upper
left lobe, partially calcified. This was
completely unrelated to my pleurisy scar, so it was considered an
"incidental finding." I was
referred to one of the top thoracic surgeons in the area. We were stunned.
The anxiety level for me and my wife started to go off the
scale.
I probably spent most of that day
on the Web reviewing the sad, gory details about lung cancer, something with
which I was already familiar as one of my best friends,
Howard, died of the disease at only 62 and I know what he went
through.
It has to be one of the worst
cancer deaths, surgery, radiation, and chemo, mostly ending in limited life
spans.
What's the point I thought?
The first appointment I could get with the surgeon was not
until the following Tuesday, a wait of four nerve wracking days.
Before all this began, Ann had already left
to attend a
Jane Austen Society of North America convention in Minneapolis, where I insisted she stay, so I
was alone for those four days to do more research which only resulted in more
anxiety and the need for accepting whatever fate was about to throw at me.
It occurred to me that as I handle all investments and bill
paying, running the house, my poor wife could be left with a quagmire so I
spent a good part of this time, piecing things together, trying to put together
a coherent document for her. In effect,
I was doing that hackneyed phrase of "getting my affairs in order." I was preparing for the worst, hoping for the
best, but getting done now what I might not be able to once operations and/or treatments
began. I even reviewed our Trust
documents, found questions regarding that, and made a list to discuss with the
firm that would become the trustee.
Luckily, friends were around to have dinner with, so there was some
diversionary activity, but when I returned to the quiet house at night, dark
thoughts interceded.
Finally, Ann returned home last Monday night and so,
together, began a week of Doctors' visits, testing, and anxiety.
The surgeon reviewed the Cat Scan with us and
was brutally frank in his assessment: it most definitely appears to be cancerous
and because of its location and
my prior thoracic battle with open heartsurgery, made it unlikely that I would survive the "gold
standard" surgical operation of removing the mass.
His recommendation was the "Cyberknife"
alternative, a remarkably non-invasive method of "cutting" out the
tumor with high dosages of radiation that are aimed directly at the tumor from
multiple angles.
I wondered why everyone would not opt for that treatment,
but I suppose the gold standard of surgical removal is "gold" for a
good reason. He explained that when a needle
biopsy is done through my back and into the lung, the radiologist would leave a
fiducal marker which would be used as a target for the radiation treatment. As anyone can imagine, we left his office
reeling with fear and dread.
First, though, he ordered a PET Scan which I had to prepare
for, hoping that it would not reveal any other cancers in my body. Preparation included not eating any foods
with carbs or sugars the day before and then fasting the day of the procedure. The
afternoon of the PET Scan I was injected with radioactive isotopes (with their caution
that I can't be near children or small pets for six hours afterwards because I
would be emitting radiation). After
injection, I had to go into a dark "quiet room" so the radioisotopes
could be fully absorbed by my body.
Nearly an hour later, I was led into a room with a long, narrow tube
where a full body PET scan and CT was performed, and had to lie perfectly still in
this confined space for a half an hour.
Given what I was likely to go through afterwards during the next several
weeks, I thought this a piece of cake.
The following morning, we had to pick up the PET Scan (all
images on a disk of course) as well as a radiologist's written report to give
to my surgeon with whom we had an appointment only 20 minutes later. Naturally, we opened the report in the car
beforehand, looking for any sign of malignancies elsewhere in my body. Hooray, there appeared to be none, but
reference of course was made to the tumor in my upper left lobe.
So, we arrived at the surgeon's with a list of questions
regarding the biopsy, the need for a marker (collapsed lung is frequently the
consequence of fiducial markers), the timing of all of this (Ann had a trip to
Africa planned which she was planning to cancel that very day), when treatments
would begin, the required follow-ups, and of course the prognosis.
When the surgeon and his nurse entered the room, I told him
we had peeked at the report, was thrilled there was nothing else, and then
started to ask him about the biopsy. He
said, what biopsy, the tumor is benign, that the Pet Scan clearly showed
that. We were stunned. What?
Huh? No, he said, the scan showed
there were no active cancers. We had won
the lottery he was glad to report (no apologies about his prior certainty that
it was cancerous). Unfortunately, we did
not recognize the "doctor speak" when reading the PET Scan report.
Phrases referring to the mass --- such as "this is grossly stable; no
abnormal uptake is identified" were key, identifying no active cancer, no
need for a biopsy at this stage, and only a CAT Scan follow up in 6 months. The
tumor might be an old TB granuloma (my speculation), and if so the likelihood
that it will become active after all these years is slim to none.
We left his office both stunned and elated, hugging and
dancing in the parking lot of the medical office, shocked at this totally
unexpected piece of good news.
But the
whole experience left me with renewed appreciation of the struggles of any
cancer patient and I remember friends such as
Peter,
Lindy, and
Howard, all of whom died of the disease, and of course my own father
who had perhaps the worst, pancreatic cancer.
My friend Jeremy (one of Peter's sons) had pancreatic cancer but it was
the type that could be addressed by the radical Whipple surgery.
He went through hell, and as a relatively young man, but survived.
It was the same kind of pancreatic cancer Steve
Jobs had but who, instead, chose a naturopathic route.
Luckily, we hadn't told the world about the "fact"
that I had lung cancer. We wanted more
details from the biopsy first. Nevertheless there were a handful of friends,
and of course our sons, who knew what we were going through. Support is such an essential element in
facing this dreaded disease so we thought we would bring a few into our beginning
nightmare. To those we involved in this
tale early on, thank you for your emotional support, and we're sorry you, too,
were taken on such a distressing emotional ride.
I had but a brief glimpse into the emotional path cancer
patients have to walk -- into a void of fear and unknowns that the medical
community might be inured to, but not the patients and their loved ones. I was certain I had read something very
profound on that very topic and discovered that a few years ago I had already
quoted it in my blog, but it bears repeating here. It was written by John Updike in his Widows of Eastwick, towards the end of
his own life and only one who has walked the walk could have written this (in
the novel, Jim has cancer): Jim's illness
drove her [Alexandra] and Jim down
from safe, arty Taos into the wider society, the valleys of the ailing, a vast
herd moving like stampeded bison toward the killing cliff. The socialization
forced upon her -- interviews with doctors, most of them unsettlingly young;
encounters with nurses, demanded merciful attentions the hospitalized patient
was too manly and depressed to ask for himself; commiseration with others in
her condition, soon-to-be widows and widowers she would have shunned on the street
but now, in these antiseptic hallways, embraced with shared tears -- prepared
her for travel in the company of strangers
Briefly I had thought that was to be my own fate, and, just
as worse, Ann's, but thankfully not yet.
