The Friday
night before the 2019 Thanksgiving week, I drove the five-minute ride to our
local hospital’s emergency room with my husband—as he was in and out of pain
along his rib cage from the xiphoid process of his sternum outward. He’d had an
annual about mid-August 2019 and as protocol for a routine physical—he was to
have an endoscopy early December 2019. It was scheduled for the extension of that
routine examination done in August.
My husband
always had good health, healthy habits for the most part. He was healthier than
most Americans. He was not on any medication as of then, at age sixty-three
years old. We rarely went out to eat. He drank plenty of water, he was well
within his weight with his height of 5’10” at about 165lbs. He ran four to six
days a week, did pushups, sit-ups, lifted weights at home when there was no
landscaping to be done by him for our home. He was a high school teacher and
was on his feet most of the workday. He’d built a chin-up bar in our backyard
and at any time he could do ten to twenty chin-ups or pullups with little
difficulty.
I’d gotten
him into drinking organic barley and wheat grasses in 2006 regularly for his cholesterol.
As well, he’d take some chlorophyll tablets a couple times a week for his
overall health. He was seasonal with our property. He’d shovel snow, rake
leaves, clean our gutters, work on the health of our trees, worked on our lawn
aside from mowing with his forty year old Bobcat push-mower. Too, he had
a green thumb. He hadn’t used any form of pesticide in fifteen years on
our property. And before that, he rarely used any. It was my demand that we not
use pesticides at all. He abided by it.
In 2012 he
worked on lowering his carbohydrates to help reduce an ocular migraine he’d
encountered that year, and an arthritic condition in his left pinky area. He
switched to grinding his own coffee and made certain he used only organic coffee
beans. Seldom did he do otherwise. Too, he’d begun using an acupuncturist I was
familiar with, which greatly reduced the pain in his left hand. He got regular
physicals. He ate eggs with vegetables and sometimes oatmeal for most of his
breakfasts, He’d have a peanut butter and jelly sandwich, or a salad with
boneless chicken, an apple, sometimes ten mini-pretzels or part of protein bar
and water for his lunches. Dinner was home and I’d provide as much as four
servings of vegetables per person. Along with that he’d have zero to a serving
of a starch such as rice with his meal. Too, a portion of poultry, beef, pork, fish
or it’d be a vegetarian meal night.
After his
50th birthday in 2006 I trained him to race his second
ultra-marathon and his furthest one, a 50-miler in a mountainous ski area of
Pennsylvania. It took him a little over eleven hours, but he did well as I’d
coached in the months prior, then crewed him with our two- and four-year-old
daughters in tow during the event. He ran about six 26.2-mile marathons with a
personal best of 3:14. He was built top-heavy, as his latts were always
muscular. He could swim in the ocean with ease for at least forty minutes or
more. He was a big hiker, loved to downhill ski, he took guitar lessons at age
52—that after a nearly forty-year layoff from doing so. In turn he’d began
practicing the guitar three days or more a week. He read every day for about
forty minutes, usually it was from a book. He slept about seven hours average per
night.
We were
homebodies. He was
a good father and family man. He handled much of the care of our two mostly
daytime, free-range, indoor bunnies. He took our daughters skiing, hiking and
taught them how to swim. He didn’t like standing on an icy pond. Too, he’d
never went fishing. I’d take our daughters ice skating outside and let them
play with hockey sticks hitting a puck back and forth outside a few miles from
our home on a near by pond when it was frigid. I taught our daughters how to
kayak, canoe, and fish. He took them to a few concerts and a movie one to two
times a year. I took them to grappling matches, fight night for boxing, Muay Thai
fights and the like. We were a solid middle-class family of four.
However,
much of that ceased going into December 2019. Our lives were upended when my
husband took ill. He’d gotten diagnosed on November 23rd, 2019, with
Advanced Localized Pancreatic Cancer. The tumor was wrapped in and around the
mesenteric and celiac arteries. There was no surgery that could be done. The
cancer was through and around the arteries and veins of those areas. So, here
we were at half past six in the morning sitting and waiting for the report of
the scans in a private room in our hospital’s ER.
The ER
doctor arrived,
the look on his face was not a good sign. He looked gob smacked. Then as I read
the report, he expressed the urgency of us seeing our internist. I realized
that my husband was a dead man walking. My husband knew it was serious. Yet had
no clue to the level of seriousness it was.
Luckily,
we’d gotten an appointment at our internist’s office a few hours later. The one
internist who I’d known to have a light essence, a near smile all the times I’d
dealt with him, had a grim look on his face as he’d read the report and then
double-checked the information via reports online from the hospital’s ER visit.
He urged us to go to MSK (Memorial Sloane Kettering) and not to wait, and to start
pursuing treatment on my husband if we could. I’d never seen that internist
with such a serious look. My husband had never met that physician in the
practice. So, he didn’t know what the inflection was as that physician looked
over at me from over the top of his computer screen. The physician mirrored my knowing.
The
ensuing days, my husband grappled with whether he should go out on disability.
I urged him to do so and put in for retirement as had others in his field
suggested. He was delaying the inevitable of retiring early. He’d already had
twenty-five years in at his school as a teacher—and at that point he was in his
26th year of teaching. Our daughters were in high school, one was a freshman,
and the other was in her junior year. All the while, now my husband was focused
on getting in for treatment, and he was thinking of the possibility of surgery.
I knew surgery was not possible; however, I didn’t let on to such thoughts. I
didn’t speak of it with anyone, I just knew it deep down. I also knew that
they’d try to slam my husband with an insurmountable of chemotherapy, which
again I hadn’t let onto the fact that I knew it would be of no use, other than
to make an oncologist and a hospital and like facilities rich with our
insurance and our funds.
Within
days after Thanksgiving my husband went into the city. It was the first of
three visits to the MSK facility in the city. The first one was a scan at MSK,
a neighbor who worked in the city offered to take him into the city, he knew
the area well. I was grateful. Then I took my husband into the city a second
time for the consultation at MSK which was on a Friday. It was after a surgeon
at MSK received the second scan. The surgeon was referred to us by a teaching
friend who’d survived pancreatic cancer of a different format—My husband had
hope. I wouldn’t dash it, for it would’ve been unethical of me.
During
that consultation, it
was obvious to me that surgery per the look on the surgeon’s face was out of
the question. There was no verbal or written que of any decision either way
from the surgeon or his staff at the time. When the surgeon was done with the
consult, a nurse of about late thirties in age arrived to take blood from my
husband. As she was seated taking blood from him, she looked up at me and
remarked, “You can exercise and eat right and still this can happen.” I wanted
to smack her upside the head. To me, it was beyond inappropriate for that talk.
It was unnecessary and was a negative remark. Besides, she herself was not the
epitome of healthy eating, nor any marked levels of exercise. As well, it was
strictly a business selling point. Since when are we not doing harm by selling
a disease?
Yes, we’ve
allowed the selling of diseases not just in our magazines, but also via the air
waves in our cars, our homes through radio, television and the internet. As such thought had been reckoned with by
“The Rolling Stones” in their song, “Mother’s Little Helper”. And Leonard
Cohen’s song “You Want It Darker”, a line in that song is “I buy what I am
sold…”. Selling a disease or suggesting a health issue of any kind is unethical
medical practices, and standards. It is converse to the line, “Do not harm.” A
line repeated by nurses and physicians alike.
So, here
we were as the nurse had finished up taking a few vials of my husband’s blood,
to prep for a future biopsy at that facility in the city at a later date. I
kept a straight face through it all, as well I played solitaire on my kindle to
not show any emotion, unless something involved my response. I’d pretty much
looked up from my kindle when they were ‘selling fear and chaos’ to us.
Remaining present and calm for my husband. I realized that, after the initial
introduction to me of some of the staff at MSK, I decided it was best not to
show any facial expression. For I was already perturbed at their approach. I
got the vibe they didn’t want me there. I couldn’t figure out why that would be
either. For I was my husband’s
patient-advocate.
After that
day, we were back in the city at MSK for the biopsies of his pancreas. We were
told that I could sit in the waiting area, and they’d keep me posted if the procedure
were to be longer that forty-five minutes, if perhaps they’d run into a problem
while he was under anesthetics. Before he was prepped that day, we’d met the
anesthesiologist that morning. The three of us briefly chatted about two ways
my husband could be anesthetized. The anesthesiologist asked, “general or
twilight?” My husband asked, “What’s
twilight?” I responded, “Its actually better for your brain. You’ll probably
come out of it easier, less groggy.” I turned to anesthesiologist and asked,
“Correct?” He agreed. I added, “Also, remember you didn’t do well when you were
under years ago for a routine colonoscopy. They had a problem getting you to
wake up from the general they’d used.” He remembered that. So, we agreed on
twilight.
Soon I
said good-bye and went to the waiting area. I sat with my kindle, and some
writing items. They told me that they would let me know when they were finished
or if something was delayed in the process. Too, I’d kept my jackets on,
because it was on the chilly in most of the facility. I had two jackets on, a
sweater, a polo shirt, two cotton cammies and a bra on covering my torso.
Time
passed, an hour had rolled by and I hadn’t received any word. Then, 90 minutes
passed and still nothing. Finally, I went to their reception desk in the
waiting area and inquired. I waited about 30 minutes before I’d gotten an
answer, that was near two hours in. It was near three hours by the time I was
told I could see my husband.
When I
could, I was escorted to an area that was chilly enough where the nurses wore
sweaters and the like under their scrubs. I could feel the chill in the air
where they had same day, post-operative patients in their own mini curtained
covered dwellings where they resided. I entered my husband’s room. There he was
laying awake in a hospital bed hooked up to monitors. He had only a gown on, no
blanket covered him. He had tears rolling down his cheeks and he was shivering.
I looked at the numbers that showed on the monitor. His oxygen was below 90.
His blood pressure, which was usually low, was as high as 160/90. He was in
pain. I looked around for a blanket, there was none. I asked him what he was
feeling. He responded in incredible distress that he could not explain. I saw that
he was in severe pain, as his body shook. I told him to stay and not get up. I
went out of his room and looked for a nurse. Finally, the nurse who was not
more than aged 34 started stating the obvious about his numbers. I had to
explain to her that he was in pain and to please check his chart if they’d
required or had given him any pain medications that were to be continued as well.
Too, he needed warmth. She looked at me like a deer in headlights.
Minutes
later I received a blanket. I returned to my husband’s room, he was seated with
his bare legs dangling off the hospital bed, shivering, still somewhat
disoriented. He needed pain relief. The nurse couldn’t find the information on
him. She went back and forth to her computer just a few strides outside his
room a few times. And still, she had no answers. Another time she’d come back
into my husband’s room and asked, “Would Dilaudid work?” I couldn’t believe she
was asking me this. I remarked, “Hey. I’m his wife. What does his chart say?”
She looked dumbfounded. He asked, “What’s Dilaudid?” I remarked, “A powerful
pain killer.” I looked at her. The nurse was indecisive. She asked, “So, you
think I should give it to him?” At this point, I’d thought that my husband
could stroke out as I saw his blood pressure numbers and too his oxygen now at
81, as it’d tanked incrementally a little bit more. I responded, “Well, he is
in pain. I don’t know what they had given him if anything prior to my walking
into his room and seeing him. He needs pain relief.” She agreed and nervously
sets up to administer Dilaudid. After she’d administered it, all his numbers
were back in line, and he’d stopped shivering within three minutes. He
remarked, “Oh man that was terrible Jody. I had so much pain.” I nodded. My
mind searched for answers.
Soon, my
husband announced that he had to urinate. The nurse got a male orderly. They
couldn’t believe that my husband was so alert, he needed no assistance to or in
the bathroom. He kidded around with the orderly. Apparently, they hadn’t
expected my husband to appear so healthy after the procedure. About twenty minutes later, a short, stout
surgeon with the personality of a doorknob entered my husband’s room. He was
all business. He stated, “So, we will have the results on Friday. We took ten
biopsies…” I was stunned, as we were led
to believe that it may be four to six biopsies. No wonder why my husband was in
so much pain. I then realized that was why it took more than double the time to
finish the same-day procedure.
Too, I
inquired and found out that no pain meds had been administered at all. Also, I
realized they were planning on keeping him overnight, which we were not kept
apprised of. I told my husband privately that was what had been going on. For
they could make more money off him. I knew so. How everything was handled then by
MSK and their staff with a laisse faire attitude, would be shocking to
most. To me it seemed procedural for them. As they had no intention of doing no
harm. If you can make more money keeping the patients and their families in the
dark, how would anyone know that any ethics had been violated?
Friday soon
arrived; it was eleven in the morning when the short stout surgeon called my
husband’s cell. A client of mine had canceled so I was home standing in our
kitchen at the time. My husband picked up, said “Hello” and added, “Hey Doc, my
wife is home from work. I’d like to put you on speaker. Okay?” The doctor
acquiesced.
Then the
doctor said, “…We did ten biopsies. It’s positive for cancer. Do you have an
Oncologist?” My husband responded, “Yes. I am scheduled to see him on Monday.”
The doctor remarked, “Oh Good.” And
basically, that was the phone call. We had the oncologist set up weeks prior,
as we’d been advised to get into see one as soon as possible. My husband hadn’t
waited.
Monday,
December 23rd, 2019, soon arrived. This time we went an ancillary
MSK facility about fifteen minutes from our home, in suburbia New Jersey. There
was a waiting room filled with people seated who’d obviously were waiting for
treatments. The room was congested, the air was stagnant. There was section to
the one side after you checked in at the front desk to the right that had coffee
and various eats you could purchase. I made my husband wait at one of the few
small tables with chairs in that section. It was cooler there, less congested
and no people who appeared haggard, and bloated from treatments. Too, it was
less advertisement of promoting disease being a happy place.
Time passed,
and as usual the appointment was delayed by quite a bit which I had expected. Finally,
they’d retrieved us, bringing us into a treatment room. The door was closed and
two women began to sell us a treatment package.
The doctor arrived about 20-30 minutes later. He too was not in the good
bedside manner of medical practices. He began describing the experiment. He
explained nothing could cure my husband. This was the first time my husband was
hearing that he would surely die no matter what was done to him. He would be
dead most likely within eight months, if he’d tried the experiment. I knew he
could not survive that blast of experimental treatments every two weeks for
more than a few months.
At one
point, the doctor turned to me and said, “Don’t even try any herbal practices.
There’s nothing. Nothing will help.” He aimed it as well at nutrition. He didn’t
want us to even try anything but his experimental treatments. Why? Because oncologists
make money off the chemistry they prescribe and administer to patients. No
other medical doctor makes money off the chemistry/prescriptions they prescribe
and/or administer to you, except oncologists. Evidently, our insurance was good
enough to pay every two weeks for eight months or until the death of my
husband. And MSK knew this. Yet there would be extras that weren’t covered and
now looking at my husband’s retirement payouts, we would have been strapped. Back
then, that’s the last thing anyone was thinking about. For you will do whatever
you can to save your spouse. I don’t even think my husband was thinking about
money. He thought he could get better, until that day at that facility. Then,
he knew there was no hope.
The sound
in the room changed after that. We were listening; however, I realized my
husband had not only gotten slam-dunked mentally, yet there were more negatives.
This scientist/doctor thought he had us. So, did his staff. I kept a defiant
straight-face and played on my kindle. That was instead of becoming verbally abusive
and calling them liars and thieves. It kept me from hating, as I realized they
all were stuck in this negative game of medicine for monetary gain, ill-gotten
gain. And only my positive attitude could give my husband any good life,
whatever he would have left.
The doctor
then explained that my husband could no longer run, be outside under 45
degrees. He’d have to wear a mask. If he wanted to walk, he’d have to be
inside. Too, my husband wouldn’t be allowed to shave, nor get any kind of a
cut, including a papercut. The list continued. Which I knew would leave my
husband to only watch television as he was told he would have diarrhea, vomit, along
with perhaps constipation for five to seven days every two weeks after
treatments. Basically, he’d lay there at home every day, wasting away, and unable
to engage in living life until his death. There was more that was stated by the
MSK staff in the treatment room that day. They really thought they had sold at
least him, if not me as well.
After the
consult, we were instructed to go to the desk to where we’d checked my husband
in earlier in the day. I was stunned when he’d set up for the treatments which
were to begin just after the first of the year. I didn’t let on to my thoughts.
After all was set up, as we’d have to go to various places in the coming weeks,
we then parted the facility. We got into our car. It was quiet as I pulled out
of the facility’s driveway, my husband piped up, “I’m going to die Jody.” He
was aghast. I looked forward at the sunny, dry road ahead, kept a straight face
and nodded. Then he added, “You knew. You knew all along.” I replied, “Yeah. I
did. But it wasn’t up to me. It would have been unethical for me to interfere,
and it would have been against my licensure to give you any part of the
diagnosis that I’d read on November 23rd.”
It went
quiet in the car as we drove back towards home. That night at the dinner table,
it was time to tell our daughters who were now in high school. My oldest had
done research. She shrieked, “Mom! You’re going to let him do that experiment?!”
I responded, “It’s his decision.” She volleyed back, “But you wouldn’t let me
do that.” I replied, “No, I wouldn’t.” She countered, “Why?!” I added, “Because
you’re a minor and he’s a grown man and it is now between him and God.” Our
youngest stayed quiet as it went quiet that night.
Days later
as it was now December 26th, Christmas had passed just two days after that
medical visit, my husband made a call to his brother. He explained everything
and gave him the news on the experiment. As they were on speaker, and I was in
the kitchen I heard heart-felt agony coming from both of them. They agreed that
my husband should not do the experiment, which had been done on 300 people in Paris.
It was that new of an experiment.
In the
coming days, my husband canceled all the experimental appointments. Afterwards,
he went for runs most days until April 21st, 2020. He walked as much
as six miles a day till mid-May 2020. He shoveled snow when it snowed. He mowed
our farmer’s acre the week before Memorial Day. He ate and enjoyed meals till
the end of May 2020. He was never ill. No stomach upset.
We’d gone
to a pain doctor I’d worked in conjunction with close to home to get some percocet
for the pancreatic pain. He’d even tried medical marijuana and decided against it,
for when it wore off, he’d experienced more pain. My husband did not ever need
more than two pills per day. Even better, he’d begun to average one pain pill per
day. The pain began to abate by mid-June 2020. Yet, the ascites fluid began about
June 1st.
We’d
gotten a new local oncologist per our pain doctor for monitoring, and if we
needed any medical procedure to reduce pain. The fluid build-up caused some
distress and in the first week of June, the physician did a same-day procedure at
our local hospital. It went without a hitch, all-good considering we were in
the height of a pandemic. They eventually connected a bag for the ascites fluid
to drain into with less than a month left in his life. My husband was able to
shave within two weeks of his death. The ascites fluid built up to less than half
what was expected. I read the 30 plus page manual on how to drain the fluid and
discard it three times. I was well-versed, yet I never had to do the procedure.
The
hospital/doctor sent us a nurse to check once a week on blood pressure and a
physical therapist in the last month, who’d also arrive once a week. This we
had in my husband’s final month at home. My husband was still eliminating
regularly, and properly. He’d gradually lost his appetite as of June 1st,
2020. On July 16th, a Thursday at just before six in the evening, the
nurse and physical therapist had just left. They couldn’t believe how good he
looked. His eyes were clear, his coloring was normal. They stated such. There
was this odd hopeful feeling from them. But I knew as my husband did, that he
was sicker. As my husband half reclined on our living room couch he said, “I’m
not going to wake up on Sunday.” I nodded. He was done and he knew it.
Soon enough,
it was Saturday morning he now had passed out on top of me three times that
week from blood pressure drops as I’d tried to help him get to the bathroom to
eliminate. He was never bruised, never had even a papercut. He’d gone to the
bathroom on the toilet like normal till then. He’d brushed his teeth too as I maneuvered
his body seated by the sink to help himself. A friend gave me a wheeled walker,
my husband used it once. Another friend gave me a commode, we never needed it.
That
Saturday morning my husband made certain he spoke with our daughters as he’d
informed them, he would not be waking up on Sunday, July 19th. He
then called his sister and brother to give them the news as he reclined in our
bed that morning for the last time. We then called hospice. One nurse showed up
and scolded us for not calling them sooner. Yet, she was wrong there had been
no reason to. He’d eaten his last meal Saturday morning which was equal to 500
calories. He had been eating mostly real food till then.
Later
Saturday afternoon, another nurse showed up who was much more professional and
caring. She brought me downstairs away from where my husband and children were
and we reviewed a DNR, the medications to be administered due to him having the
hiccups for now nearly twenty hours.
Which showed his liver was failing. The pancreas had already failed, and
the liver had picked up where the pancreas had failed to function.
A hospital bed, oxygen tank, adult diapers arrived
within 30 minutes of that nurse being there at half past two that afternoon. By
quarter past three, an apothecary rang our doorbell and the medicines to
relieve the hiccups and pain that went with it arrived. The nurse reviewed
everything with us. She left. I administered two medications and set my alarm
for each hour for each medication for me to administer to my husband.
We were
like clockwork. Our youngest helped me pick my husband up, after I diapered him
to put him into a hospital bed, which was just a few feet from our bed. By half
past eleven that evening, he was receiving another dosage. He insisted on
taking in water himself with no help. About 90 minutes later he woke me up as
he was arguing in what appeared to be a deep sleep, yet he was awake. This happened
a few times over a forty-minute period. I can’t remember anything till about
ten minutes before five in the morning Sunday. I then awoke, I was laying five
feet from my husband. I realized that it was more than an hour past when I was
supposed to administer a dose of medication to him. My alarm had not gone off.
One alarm was five feet to my left, I hadn’t shut it off. No one could have
shut it off without my knowing. A few minutes later I realized that there was
peace. I heard nothingness. It was now two minutes to five and I arose
realizing he was gone. Weeks later, in speaking with a physician who knew our
circumstances he’d expressed, “Whatever you did, we never expected him to live
past March 1st.” ---Jody-Lynn Reicher 1/30/2025
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