Responsibility: The quality, state, or fact of being responsible. One that a person
is responsible for.
Responsibility in the context of which my role was defined as a sister and a friend
while my brother neared the end of his life was profoundly meaningful to me.
Although the challenge of this role was incredibly daunting as well as critical at
times, I was honored to share in the responsibility that ultimately led him toward
Essentially, I realized that the real value of his life journey was ultimately viewed
according to his character. Meaning, I measured him by his integrity, honor and
humility, which made the lost for me even greater. And, when losing someone so
cherished and admired knowing his death was imminent, I was confronted with the
emotional finality that I would be left behind.
As someone who has experienced such an extreme and personal loss, I still find
myself faced with deep feelings of emptiness. And as I continue to examine the
relationship between the truth of his existence and the merging of his life
experiences, I can’t help but think that together it’s what pushes us to make the
choices that essentially determine our fate.
When my brother became terminally ill and eventually died from complications of
colon cancer at the age of forty-one, I wanted to understand. And although it’s
been fourteen years now since he died, it seems that I am closer to understanding
the reason. I miss him.
A generosity of spirit seems to be what the world aspires to be and ironically, this
was the common theme that most accurately describes my brother, Marc. That ----
and the fact that he was incredibly funny! His Sarcasm, quick wit and sharp sense
of humor really defined him. He was literally ‘the funny guy’. Marc thought the
world was a happier place when he had the floor. And he was right. He was
everyone’s best friend. And I mean that! The days leading up to his passing, I
can’t tell you how many telephone calls I received from his friends whom were
grief stricken claiming to be losing their ‘best friend’ to cancer.
I was awe struck by the natural ability Marc had to make every person feel so
important and special that they would consider themselves to be Marc’s best friend.
That was amazing! The irony of course, if you knew Marc at all, you would
univocally know that - I was actually his best friend.
It’s interesting, although Marc was extremely comfortable when socializing
amongst his friends and colleagues, he considered himself to be, as did others, a
very private person. Ironically, he never wanted to create a fuss or cause a stir. He
was quiet and reserved and kept to himself when it involved his personal life.
In times of tragedy, my experience is that family and friends either act or re-act. I
think it goes back to how you cope individually that dictates your behavior.
Whatever the case maybe, it’s an interesting and often difficult development as
personalities unfold, and family dynamics appear. Our family’s experience in
response to my brother’s cancer diagnosis and later to his death encompassed many
January 9, 2003
Preoperative Diagnosis: Crohn’s colitis with peritonitis.
Indications: Marc is a 40-year-old male who has been watched in the hospital for a
splenic flexure phlegmon. The patient developed increased abdominal pain and
distension today. He is brought to the operating room urgently on the evening of
January 9th for exploratory laparotomy due to peritoneal findings.
Estimated blood loss 600 cc
January 9, 2003 2:30 am
The surgeon completed the emergency surgery and came out to the hospital
waiting room to find our entire family (small nieces and nephews included)
to discuss Marc’s surgery. Although he confessed it was a difficult surgery,
he was relieved to tell all of us that Marc was “stable” and would recover in
ICU for further observation. He went on to say that he performed a partial
colon resection - and (ileostomy) to redirect his bowel in an attempt to save
part of his bowel that was further complicated by his crohn’s and colitis
The surgeon said, “He has a perforated colon and peritonitis (inflammation
in the lining of the abdomen).” Finally, he announced, “I found NO sign’s of
cancer during the procedure.”
January 10, 2003 8:00am
We took turns visiting Marc in ICU. My mother went first. When I arrived
Marc was in obvious pain. When I approached his bedside he grabbed me
by my shirt collar and pulled me to his face. He told me he couldn’t stand
the pain and to please help him get more pain medication. Right then, his
surgeon walked in (Marc was still holding my shirt collar).
I asked the surgeon to give Marc more pain medication as clearly he could
see what was given to him was not working.
The surgeon said, “Although I recognize having peritonitis is extremely
painful, as is the recovery of his abdominal surgery, I didn’t want to give
Marc more pain medication because Marc’s blood pressure was falling
rapidly.” Then he said, “Adding more pain medication would lower it even
more and that it was too dangerous in his current condition.”
Noticing Marc’s obvious discomfort I asked, “Well what can you give him
that would knock him out so he wouldn’t have to deal with the pain, but not
affect his blood pressure?” The surgeon stared at both of us for a moment in
silence. Finally he agreed to increase the anti-nausea medication, which
“apparently” had a sedating affect.
Marc suffered from Crohn’s and inflammatory bowel disease for more than
ten years prior. Without question, he was someone who considered himself
to be strong, confident, and particularly resilient. I think he believed he had
the ability to just “decide” the outcome of his circumstances affecting his
health. He was determined to prevail in spite of the odds. In fact, he was
convinced he could navigate and somehow dodge his way through each
diseased driven bullet - that struck him.
He endured many physical complications relating to his disease - with
numerous setbacks. In the same year (2003) - he had inflammatory bowel
disease, crohn’s, a perforated bowel, and peritonitis and colon cancer. In
addition, he suffered from recurrent pulmonary emboli (blood clots to his
lungs) and idiopathic-endocarditis (inflammation of the heart from unknown
causes). The standard treatment for these ailments was steroids and blood
thinners, among other medications. However, extended use of these
medications contributed to other complications for Marc. The steroid
treatment weakened his bone mass, which eventually affected his spine.
While Marc was still hospitalized with complications of the colon cancer, it
was determined that he had fractured ten vertebrae and would require three
surgeries (addressing three vertebrae at a time). He recovered well from the
first surgery (Kyphoplasty), which actually involved cementing the fractured
vertebrae for stability. While recovering from that procedure, Marc noticed
an unusual and fast growing growth on the right side of his face. It was
biopsied and confirmed to be cancerous (squamous cell). That growth was
cause for concern and was immediately removed.
Shortly thereafter, Marc was transferred to UCSF for further care. He
remained there for 6 weeks. His stomach did not work despite numerous
efforts to stimulate his bowel. All nutrition was given IV TPN (total parental
Late February 2003 Marc was released from UCSF and returned home for
further care. We decided that independence and a healthy home
environment fostering only positive energy was the most important piece to
Marc’s recovery. Everything medically possible (at that point) had been
offered. So we got busy and lined up a home -acupuncturist, a home -
health- nurse, a physical therapist, and got together with a nutritionist. We
ordered all the necessary ileostomy supplies, learned how to administer the
TPN and saline solutions and made the local doctors (Oncologists,
Gastroenterologist, and Labs) contacts for the necessary follow up care. We
had a schedule ~ and we kept to it. Once Marc’s nausea was finally under
control, we were on a roll!
I remember one particular conversation I had with him following his initial
cancer diagnosis. He was finally home from a very long hospital stay and
we were sitting in the kitchen. He asked me, “Do you think I can beat
this?” (He hated to lose anything. A game, a bet, a quarter. Anything).
I told him, “I do believe there is a familial component (several of our family
members have autoimmune disorders) that plays a part in why our family
appears to be more susceptible to certain diseases. I told him, “Genetically
- we’re built cheap! But - we’re tough!”
I reminded him that our maternal grandparent’s lived into their mid 90's
despite a number of serious illnesses. I told him that our father survived
throat cancer, and three of our siblings have autoimmune disorders.
I told him, “If anyone can survive this hideous disease it would be you. No
one thought you would survive the emergency surgery when your diagnosis
of cancer was made. Remember the huge malignant tumor that perforated
your colon and caused peritonitis? Most people die from that alone! You
were in ICU and so sick that your doctors were worried you wouldn’t make
it through that, and they were wrong then. Right?”
Eventually, and to the surprise of many, Marc began to eat by mouth :).
Truthfully, I believe Marc overcame such incredible obstacles largely
because he refused to surrender to what he considered defeat. He was
amazing. He gave everyday his best effort and lived that way for ONE
With a year under his belt, he even went to Hawaii with his two sisters for a
week, while still receiving TPN (Total Parenteral Nutrition). He did this in
addition to eating by mouth to assist in his recovery.
Many of his difficult times were dealt with through his humor. Once, after
he’d been discharged, he faked having a seizure when I tried to administer
the saline, but blood came back through his IV line. When I began to
scream in panic, he looked straight up at me grabbed my arm and said,
“Lighten up. You’re too serious.”
As time passed, the blood thinner’s that Marc took to control his blood
clotting disorder were stopped, as they was found to be exacerbating the
bleeding found in his colon. Marc noticed he was releasing large amounts of
blood (in place of stool) when he went to the bathroom. He also complained
of a “full” feeling when trying to eat or drink, even small amounts.
Shortly thereafter, he began vomiting blood. While doctors investigated the
cause of these bleeding episodes, they discovered that the cancer had spread
to Marc’s rectum and the crohn’s disease had spread to Marc’s esophagus.
The Gastroenterologist told Marc that Crohn’s of the esophagus was
extremely rare. He explained to him that his esophagus was no longer
functioning and described it as literally crumbling. The doctors had to
weigh which disorder was more life threatening at any given moment, and
make their decisions accordingly. Marc’s illness had evolved into something
virtually uncontrollable. Through each setback, Marc never quit!
February 20, 1994
Marc was back in the hospital.
I turned around and saw the night nurse. “Yes.” I answered.
“You can see your brother now,” said the nurse. Her name was Sheila.
She’d been Marc’s night nurse for the last five nights in a row. Sheila was in
her late fifties and had three grown boys, all-living on their own. She was
proud of that fact. Her husband’s name was Chuck. He was an electrician
but was getting ready to retire. She and Chuck were planning a trip to
Alaska that spring. They hadn’t been on vacation along together since their
honeymoon. I’d learned so much about the nurses taking care of Marc over
the past year. All were very sweet, kind people.
“How is he?” I asked, but already knew the answer.
“Honey, he’s the same.” Sheila was attached to Marc. All the nurses were.
Why wouldn’t they be? He was a model patient, never asked for anything
especially to be sick. He was kind to everyone, even those who came to his
room to take out his trash.
I walked into Marc’s room and just stared at him. He slowly opened his
eyes, acutely aware of the goings on around him. He returned my glance and
I pretended to smile. He just shook his head slowly and closed his eyes
again. I stood staring, but my smile quickly faded. Finally I turned and left
his room. I waited outside his door while Sheila walked in and took his
vitals. I could hear Marc’s voice. It was low and scratchy. I could tell he
was scared and I knew why. It seemed like in the span of forty-eight hours,
his condition had shifted to a dangerous point. He was told that his cancer
had returned, despite his grueling attempt of intense chemotherapy for the
past four months. He was no longer comfortable. No longer hopeful, and
that was devastating for me to witness. It was moments like these when I
really allowed myself to realize the reality of Marc’s mortality. I knew it was
imminent and that there was no escape. So badly I wanted to flee —leave
this bad dream. I slipped down to the floor outside Marc’s ICU room
hugging my knees with my face hidden. I felt tears drop from my cheeks
onto my pants, silently sobbing. Paralyzed by my emotions, I just lost
control. I was no longer hopeful. I felt ineffective. Helpless. I couldn’t
change him or save him. His pain was immeasurable. But the thought of
“losing” this battle was incomprehensible for him. And I knew that.
Tuesday, February 24th, 2004
He had slipped into a coma. How he opened his eyes while in a coma only
while we said the Our Father prayer. How while we were so sleep deprived
and all stayed over night with him in ICU. I announced I would go out and
check with the nurse and ask about his status. When I returned - I shared
with my family “he was doing fine,” according to his nurse.
My mother took that to mean he would be fine. She wandered about the
room (which was before so somber) talking loud, feeling happy, and stroking
Marc’s face to reassure him that he would be fine. The mood took over the
entire space of the room and before I knew it, I saw all of my family
behaving the exact same way. They seemed happy, walking around making
“Didn’t they hear me?” I thought? Finally, I yelled, “Everyone! Look, the
nurse said he was doing fine, NOT that he would be fine...do you understand
the difference? He is not fine!” Unfortunately, I was intuitively aware of his
condition. At times it was simply unrealistic to expect that Marc would
recover, even for me.
Marc had been comatose for more than 48 hours. But when my mother sat
by his side holding his hand humming children’s songs that she could hear in
her head, he would respond to her voice (only her voice) by squeezing her
hand. In the last days of his life while he slipped away further, he seemed
to somehow accept his disease. His acceptance gave us the ability to “let
go” and allow him to journey toward eternal life. As he moved peacefully
toward his spiritual place of being, we witnessed something amazing. At
that point, it had been over 72 hours since Marc responded to even the
slightest physical touch. We decided to hold hands and pray over him.
We said the Lord’s Prayer. This was the prayer he himself had requested to
be said with him by a Catholic Priest the last conscious day of his life. As
we prayed over him, something incredible occurred. He opened his eyes.
We stood quietly and watched him with amazement. As a family, we
continued to pray over him reciting the Lord’s Prayer. And every time we
said it aloud, he would open his eyes. It was as if he wanted us to know he
knew we were with him - both physically and spiritually. It was the only
way he could communicate with us after so many days with nothing. Even in
his physical state of being, his affirmation to us was unfailing. He was
strong, confident and particularly resilient, still.
Marc died peacefully on February 26, 2004.
Responsibility: The quality, state, or fact of being responsible. One that a person