How do you teach those who heal others
How do I get through to the young doctors. Is it even my place to try to get through to
them? Someone must at least attempt to.
These questions and dilemmas arose recently. They arose
because of suffering that even one who is well versed in descriptive language
would be hard pressed to verbalize.
It all began on a gorgeous winter morning. It happened to be
my favorite day. I’ve always loved Valentine’s Day, and the day began with
beautiful and unseasonably warm weather. It held promise for a wonderful and
restful Sunday.
I went upstairs to my bedroom to dress and prepare myself
for the day and to get ready to make my bacon-loving husband his routine Sunday
morning breakfast of bacon and eggs. After removing my pj’s I realized that I
hadn’t checked my original surgical sites in a little over a month. Checking
the right thigh’s surgical incision of 2013 for stage 3 malignant melanoma and
the sentinel lymph node biopsy site in the right groin had become a monthly routine.
Both my surgical oncologist Dr. Steven Katz and my medical oncologist Dr.
Vincent Armenio had instructed me of the importance of checking these 2 sites
by gently passing my fingers over the incisional scar. They strongly impressed upon
me the need to perform this inspection, as these would be the first areas of
concern for recurrence if the melanoma were to return. It would return to the
same site first in all probability.
So, without delay, I gently passed my hand over the scar
that runs along the right lower thigh. This is a scar that is approximately 8
inches long. It has long since healed and it felt flat and smooth like it
always has. I then moved to the area of
the sentinel lymph node biopsy in the right groin. A sentinel lymph node biopsy
is a procedure performed at the time of the original wide excision of the
melanoma to determine whether there has been metastasis to the lymph nodes. A
radioactive dye is injected IV. It contains special biomarkers that can be seen
under fluoroscopy. These sentinel nodes are then removed and sent to pathology.
If melanoma is identified in the lymph nodes, it makes it a very ugly and
complex journey ahead. At the time of my original surgery the sentinel nodes
were clear of melanoma, which was not only a great relief but very
encouraging. On this beautiful winter
morning, my favorite day of the year, my life took another sharp detour. There was a hard lump in the groin the size
and shape of a large peanut M&M.
I thought my heart would stop beating. I couldn’t breathe
and came close to passing out. I knew clearly what this meant. I knew that my cancer had returned, and in the
worst spot of all. I could hear Dr.
Katz’s voice repeating his relief when the original sentinel node biopsy was
negative. His words to me exactly were “I am so relieved that the pathology was
negative. It would have been an extremely ugly complication and resulting
surgery if it had been positive”! So
needless to say, my fright was indescribable. Struggling, I slowly regained
control of myself after several long minutes. During the time that I was
dressing and getting ready for the day my mind was racing with what I needed to
do because of this discovery. I quickly decided to keep this news from my
beloved husband for the time being. He has
been through so much in the last 3 years during my journey with the evil beast
melanoma. I received my diagnosis only 5 short months after we had married. We
found each other later in life and both were widows, so to know that I was
causing him so much worry was almost too much for me to bear. In all honesty,
he has been my sunshine through it all. He faces this with a smile and with a
“what can we do next to beat it” attitude.
He has been my companion, my nurse, my caregiver and my rock. He is
truly a blessing. To make things a little worse, the next day was a national
holiday and I knew that my surgeon’s office would be closed and I would be
delayed in initiating the necessary appointments. This was the longest 2 days
of my life.
I am a pretty controlled person, not prone to hysterical
outbursts, so when I finally spoke to my surgeon’s nurse Doreen on Tuesday
morning, she knew something was very wrong. I was having great difficulty
relating to her what I had discovered because of my fright. When finally I was
able to tell her what I had found she was amazing. That day she arranged an
ultra sound at Roger Williams Medical Center. The hospital is very close to my office so I
left mid-day to start the extensive medical journey that would be a large part of
my time and schedule and thought process for the next 10 days. After
registering at the intake center, I was taken to the Xray department. The tech
was gracious and understanding and did her best to make me comfortable. During
this test there is a gel that is applied to the skin and a special wand is
pressed to the area in question, in my case, the right groin. This then
transmits a picture of the underlying tissue and problem areas, if any, to a tv
monitor. Because I have been a frequent patient in that hospital and in all the
diagnostic departments for the last 3 years, I know many of the personnel. The
tech was quiet and pensive and when the test was completed she wished me luck. In
all of my previous studies, she would give me a verbal report of the test
results, but not this time. I knew why and respected her professionalism.
Doreen also arranged for an FNA (fine needle aspirate) to be
performed in the office the next day. This is a procedure where a large gauge
needle is introduced into the lymph node 8 or 9 times and cells are harvested.
These cells are then sent to pathology for identification. Dr. Katz was out of
town for the week so his surgical oncology resident Dr. Reha performed the
procedure. He was compassionate and proficient
in the procedure and tried to ease my fears. After much deliberation on my
drive home, I now felt that it was time to tell my husband that again our fight
against the evil beast would begin anew. As always he was a rock and said we
would fight as hard as we needed to, to ensure that we would again conquer the
evil beast.
Over the next week additional diagnostic tests began which
included CT scans with contrast of the pelvis, abdomen, chest and an MRI of the
brain. I truly thought that I would glow in the dark after all these tests were
completed. It almost felt as though I
were being poisoned with all he toxic contrast material being injected
intravenously to perform the tests.
After Dr. Katz returned it was time to receive the results
of all the testing that had been performed. He was genuinely sad to give me the bad news
that my cancer, the evil beast malignant melanoma, was now metastatic and had
spread to the lymph nodes. His words of
3 years prior, “an extremely ugly complication and resulting surgery” haunted me.
He had also told me after our first meeting that we would be “friends for
life”. I now understood what he meant. The human psyche is an amazing thing.
Although, being a member of the medical world, I knew the seriousness and the pending
implications of the words he had just spoken to me, but the gravity of the
situation didn’t sink in for a few days. This is a blessing as it allows one to
attend to the details of multiple appointments and clearing work schedules and
finding adequate coverage for my patients.
One of his dermatology oncology residents was with us at the
time of this dire news and explained what could happen during surgery, but that
no one confidently knew before they opened me how extensive the procedure would
be. He also explained that I would need
chemotherapy again after fully healing from the surgery. Radiation therapy was discussed also. Having
had chemotherapy already after the first surgery and not doing well with the
side effects, this was the one part of the whole discussion of my care and
treatment that I dreaded. Being a healthcare provider myself, I knew to a
certain extent what I would be facing, or so I thought. So quickly, a surgical
date of the next Monday was planned and booked as well as pre-admission
testing. All of these appointments, too numerous to count, were attended while
still working full time in my own very busy medical practice. I am a Nurse
Specialist in the field of Ears, Nose and Throat, Head and Neck medicine.
One would think that having dealt with this ugly beast called
melanoma for 3 years that you would be well aware of not only the medical
possibilities, but be mindful of the “what ifs” life can deal to you. “What if”
I can’t work again. “What if” there are complications to the surgery. “What if “ I die this time. Two weeks into this very extensive and
physically and mentally draining diagnostic process, I experienced an epiphany,
“oh my God, I have not prepared for the possibility of a bad outcome”. You
might assume that after the first diagnosis of a very aggressive cancer, you
would ensure that all legal avenues had been traveled to prepare the family for
the inevitable. This couldn’t be further
from the truth in my case. Upon reflection, I could see that the initial
diagnosis did not hit home as real to me. I was so fortunate, as I had
absolutely no pain associated with the first 2 surgeries, which I found to be
medically odd. Exactly one week after the first surgeries, I was back in my
office running up and down the halls, in and out of exam rooms and assisting
doctors like I hadn’t had the dire diagnosis and extensive surgery I had
received. Although chemotherapy after
the surgery was absolutely the most challenging time of all, after 6 weeks I
was again in the office full time. Since that time, there were 12 more
surgeries until this new diagnosis and I had sailed through each and every one
of them without a hesitation in my work schedule or my social life and without
ever taking pain medication.
Somehow, this recurrence of the aggressive cancer, slapped
me right in the face. It was like I was seeing this beast for the very first
time for the nasty and potentially fatal disease it was trying to become in
me. Having only a few more days until
the surgery would take place, I quickly updated all the beneficiary information
on retirement plans, 401k and insurance policies. A will was drawn up as well
as a durable power of attorney for all medical issues and all my credit cards
were paid in full. I didn’t want to leave anything behind for my family to deal
with if my outcome wasn’t good. For the first time, this disease was real to me
and I knew I would be fighting for my life and just as importantly for time.
The weekend before my surgery was very busy. The time was
filled with chores that needed to be completed. Preparing the house to be
without my attention for a couple of weeks kept me busy on Saturday. On Sunday,
the day was spent cooking meals for my beloved husband so that in my absence,
he would have good food to eat and not rely on junk food like McDonalds. I was
told that my hospital stay would be at least 2 days but knew that my condition
would prevent me from cooking. A week’s
worth of some of his favorite foods were prepared for him so that when he
returned home from the hospital in the evening, he could rest and have a nice
meal. These duties provided a much- needed mental diversion for what would
happen the next day.
Monday was the surgical day. I was to report to the hospital
at 9am for a 10:30 surgical time. Being a stickler about being prompt, we
arrived at the hospital at 8:30am just to be told that the surgical time had
been changed to 11:30 and we would have to wait to be brought into the pre-op
arena for another hour. Waiting has never been hard for me. My religious
background is Roman Catholic and I tend to say my Rosary during times of duress
as well as while I am driving or waiting. This was a perfect opportunity to say
my prayers, or I should say, say additional prayers. However, they called me in early as a patient
that was to have surgery before me did not show up and they would take me in
his place. So at 10am I proceeded to the pre-op arena. My husband and I said
our “goodbyes and see you laters” and I was led to my bed by the intake nurse.
An IV was started and a parade of different physicians and medical students and
anesthesiologists made their way to my bed, all the while, I am still saying my
prayers. By 1pm my surgeon came in to visit and to tell me that he apologized
for the delay but that “I was the main attraction” that day and he was waiting
to get the biggest OR suite to accommodate the students and residents that
wished to observe (I should have known then that I was in trouble!). I assured
him that I wasn’t going anywhere and the start time didn’t matter to me. He
left and my praying continued. For me, saying the rosary is not only praying,
it has always had a calming effect on me, so waiting until the surgeon and the
suite were ready was not hard for me. What I didn’t realize at the time was that
my family was already calling the hospital to check on me, and what hospital
room I had been admitted to as they still thought that my surgery start time was
10:30 am. Surgery began at 3pm.
The first thing I remember after surgery is hearing someone,
who turned out to be my recovery room nurse, say to me, “you have a lot of
people calling here worried about you”. It was 8pm. The surgery had taken
longer than expected. My husband tells me that my Surgeon spoke to me in the
recovery room but I have no memory of that. The next lucid memory I have is
being wheeled out of an elevator and hearing “Mommy, Mommy, my Mommy is here”.
At this point I realized that I wasn’t dead. The voice I heard was my middle
child who, by the way, is 43 years old. When he is kidding with me he calls me
Mommy. But his voice revealed great relief just to be able to see that I was
intact in one piece after a long day of waiting and worrying. During the day, because of the new HIPPA
privacy laws, my three children were unable to get any information from the
hospital. And because of the late start and the long surgery, the hospital was
closed to visitors and they were not allowed to enter. But my middle child
being very charismatic with a personality larger than life itself was able to
convince an emergency room security guard to escort him to the floor that I was
being admitted to. This began a 4- day
hospital stay. The Nursing staff was superior and attentive. The private room
was beautiful and comfortable, but trouble began almost immediately.
After my husband and son left the hospital for the evening
my blood pressure started to drop. It kept dropping all night and remained at
62/40 all during the night. The night Nurse was wonderful and didn’t leave me
but for short periods. They started to push IV fluids thinking that because the
surgery took place so late in the day that I had been fasting way too long and
was suffering the side effects of that. They pushed the IV fluids to such a
degree that my hands (the only parts of my body I could easily see) were
swollen so large that I couldn’t close my hand or bend my fingers. They
actually looked like the Pillsbury dough boy’s hands, round and puffy. I spent
a very fitful first night. My pain medication included Vicodin by mouth and
Morphine IV. This was my first experience with Morphine and discovered very
quickly that I wasn’t tolerating it nor was it effective in relieving the pain.
By early morning my blood pressure had
risen to 98/50, which was a relief.
The next morning the medical parade began. Because of the
extensive type of surgery that it was, there were quite a few residents and
students assigned to my case for educational purposes, from PA’s to surgical
residents and oncology residents. These young and eager residents seemed to
enter the room in waves of white coats, 4 and 5 at a time. I was aware enough
to realize that when they brought down the sheets to examine the surgical site
that they had puzzled and concerned looks on their faces. I was not able to see
what was concerning to them. I knew that I was in terrible pain but thought
that it was due to the difficulty of the surgery, that it was expected. What I
didn’t know until the next day is that I had developed a compressed abdominal
hematoma that had distended my abdomen to twice its normal size and had turned
my lower abdomen black. The severity and the degree of pain that I was
experiencing was impossible to put into words. Receiving one Vicodin and
Morphine, which really did nothing but make my teeth chatter and give me
tremors, was grossly inadequate. And yet, my physicians were very concerned
about changing this medication. Because of the hematoma, they were afraid that
a change in medication could potentially worsen an already black and distended
abdomen. And evacuation of the hematoma was not an option. Harvesting the lymph
nodes in the groin was a torturous process because they were situated very deep
in the groin. A large amount of muscle tissue had to be removed with the
nodes. This procedure left the femoral
artery unprotected. This was remedied by creating a muscle graft from the
neighboring abdominal muscle to form a protective layer over the bare artery.
Dr. Katz could not chance disturbing this graft as it could ultimately compromising my right leg.
Just when I thought that I knew how painful this surgery
could be, I realized I had no idea. For the first 2 days of admission I was
confined to bed with an indwelling foley catheter. Also attached were leg pumps
to prevent DVT (deep vein thrombosis). So I hadn’t attempted to get out of bed.
The morning of the third day, the student PA came in to the room very early, he
was always first to see me. He said, “Well, today I think we will remove the
foley catheter”. My response to him was, “are you kidding me, you don’t even
know if I can support my weight to walk and you are going to remove the
foley…wouldn’t it make more sense to get me up first and make sure I can make
it to the bathroom!” He thought about it
for a second and agreed that maybe that was the best idea. He left the room and
my nurse came in the room to, yes that’s right, to remove the foley. I assume
that his thought process was that if they removed the foley I would have
absolutely no choice but to get up and move. This turned out to be true but
what it also did was reveal the true depth of pain that I was experiencing. One of the first things we are taught in
nursing school is that to get the best results from a post-op patient you need
to insure that their pain is controlled.
Medicate the patient adequately for pain before you challenge them to
new activity. I guess they didn’t teach that in medical school. Did I mention previously that not only did I
have an abdomen distended twice it’s size with a blood clot but the incisional
line was 20 inches in length. It extended from mid-thigh to just below my belly
button. There were also 2 JP
(Jackson-Pratt) drains to help assist with excess drainage.
First of all, I must explain that I am one tough cookie.
From the beginning of this ugly melanoma journey of three years duration and 13
previous surgeries later, I had never taken pain medicine stronger than
Tylenol. The first 2 surgeries were
extensive but even then, never even took Tylenol. I do not easily give in to
adversity whether it is physical or emotional. To experience this severity of
pain that even the strongest of medication wasn’t touching was a new and
disturbing twist in this already convoluted melanoma journey.
My family arrived on the third day post-op to find me almost
unrecognizable with the degree of pain that I was in. My face was distorted and
unrecognizable. At this point, my doctors had no choice but to change my pain
medicine to IV Toradol and increased the Vicodin to 2 instead of one. This change gave me my first relief in 3 days.
I was able to walk to the bathroom after receiving assistance with getting out
of bed from a nurse with the aid of a walker. The fact that I needed the
assistance of a walker was extremely discouraging to me. I have always
associated walkers with disability and old age. At this point I was feeling
both.
On the morning of day 4 the usual parade of young white
coats made their entrances. The routine was well known now. The sheets would be
pulled down, my hospital gown would be pulled up and I would be left bare and
unattractive for all to inspect. It is a very humiliating and a humbling
experience. The last to arrive that day was my Dr. Katz. He proceeded to tell
me that he felt my discharge was in order but that he felt that I needed more
care and was discharging me to a rehabilitation hospital. For the first time in
the 4 days since surgery, he saw the old me, the feisty redhead that usually
didn’t take this kind of news without a fight.
My words to him exactly were, “hell no you are not”. Well, that stopped
him in his tracks. I totally understand that he was afraid for my safety and
that I wasn’t ready to navigate my 2 story colonial home. I explained to him
that I have a very attentive family and an army of support to help until I
could fend for myself. He agreed, with reservation, to allow me to go home but
I would have to spend the rest of the day in PT being taught to walk with a
cane and walker and learn how to climb stairs with a cane. If the Physical Therapist approved it, I would
go home. No one has ever worked harder to achieve a goal as I did that day. And
of course, like anything else that I put my mind to, I did well in PT and was
discharged to go home that night.
As I sat in a wheelchair at the nurse’s station waiting for
hospital transport to bring me out to my waiting husband and away from 4 days
of suffering, I observed one of the oncology residents at the far desk. He was a very young, tall, athletic build young man. He had just written my
prescriptions for me to take home. He had written for Vicodin, one pill every 6
hours for pain. As the nurse gave this to me she also relayed his message that
he wanted me to get off of the pain medicine as soon as possible. So as I sat
in the wheelchair, anxious to be home but afraid all at the same time and in
quite a bit of pain from my marathon day, I realized that this young, healthy
man really, really didn’t know what pain was. Oh, I’m sure in his short life he
has had an occasional brush with minor injury and illness, but he truly didn’t
understand the depth of pain a cancer patient will experience, nor would he
ever understand it. Medical students are taught everything they need to
practice medicine, but they are not taught empathy for suffering. That is a
trait you either have or you don’t. I am very fortunate to have a surgical oncologist, Dr. Katz and a medical oncologist, Dr. Armenio, who are both blessed with great empathy for their patients.
I was so happy to be home, to be with my husband and with my
family that kept dropping in to make sure we were in need of nothing. I
couldn’t navigate the steep stairs to our bedroom on the first night so I got
comfortable on the recliner and spent a peaceful and serene first night back in
my beloved home. I followed the doctor’s orders to try to get off of the
medication as soon as I could, by taking only one pill (Vicodin) in the morning and one
pill at bedtime while taking Tylenol during the day. This was extremely
difficult because of the severity of pain that I was in. I actually thought
that maybe I was being a baby about it and to “man” up and take it.
The days were long and full of visits from my visiting
nurse, visiting PT and friends and family. I tried to move as little as
possible to minimize the excruciating, never-ending pain that I was
experiencing. Finally my first post-op office visit was at hand. It was now 10
days after surgery. I was distraught because I couldn’t imagine how I was going
to have the strength to do all that needed to be done to not only get ready for
the visit but to physically get in the car and navigate while at the doctor’s
office. Of course my husband was right by my side but my pain was extreme and
my movements limited. I hadn’t realized how very bad I looked until I arrived
at the cancer center for my appointment. The medical receptionist, who I knew
well from my 3 years of frequent visits didn’t recognize me. Dr. Katz’s nurse
was visibly upset at the sight of me. When she asked, “my God, what is wrong”,
I finally found someone who would listen to me and understand the degree of
pain that I was experiencing. Doreen is a wonderful nurse and immediately
relayed my condition to Dr. Katz and his assistant Dr. Reha. They both
apologized for the degree of my pain and asked why I hadn’t called to report
that the medication prescribed for me by the young resident wasn’t adequate to control
the pain. I shared with them that I had never experienced or could even imagine
this severity of pain and thought that maybe I was babying myself. They assured
me that my pain was real and they changed my pain medication to 2 Percocet
every 6 hours and Mobic one pill a day. My
recuperation progressed quickly from that day forward. If you will remember, as
I’ve stated earlier, one of the first lessons a new student nurse learns is to
control a patient’s pain before you challenge them to move and begin recovery.
I am a perfect example of that theory and maybe medical schools should teach
the same lesson plan. I understand the concern for the use of Opioids, however, fresh post-operative patients need to be evaluated according to the severity and extent of the surgical procedure and their past history of opioid use.
It was approximately at this same time that I started to
experience drainage from the incisional site in the area of the groin. As I’ve
said, there were 2 drains in the surgical area to help minimize swelling and
fluid retention. But this is not where the drainage was coming from. I told the
visiting nurse about this and she came to my home to examine the area and to
make recommendations. Because of the size of my distorted abdomen and the
difficult area the drainage was coming from, I couldn’t identify what was
causing it and where it was coming from. Technology today can be so beneficial.
My nurse was able to identify the area of concern, and took a picture of the
area with my smart phone. It was obvious that three of the surgical staples had
torn away revealing an eraser head sized opening through which the drainage was
finding a way out. Mystery solved, but
the amount of drainage just increased hour by hour and day to day. I was
unprepared for this occurrence and needed to get creative in how to react to
this amount of drainage. I wasn’t concerned so much with the amount of the
drainage at this point. It is also a theory taught in nursing school that
drainage, no matter how heavy a flow, is better out of the body then in the
body. So I put my thinking cap on. I was changing pajamas 5 to 6 times a day
because the drainage was unstoppable. So without medical supplies on hand I
took 3 extra absorbent Bounty paper towel, put them together, folded them in
4’s and placed this over the site of the drainage. I then took a Ziploc bag and
placed that directly over the folded paper towel in the attempt at keeping my
clothing dry and stain free. All of these protective shields were held in place
by my undies. To be honest, it worked
pretty well and thank God my husband had just bought a case of paper towels. In
the first 4 days I had gone through 6 rolls of paper towels. I actually
collected just 2 hours worth of drainage soaked towels to show one of my fellow
nurses that came to visit. I knew that unless she saw it with her own eyes that
she wouldn’t believe the amount.
By post-op day 15, the amount and consistency of the
drainage was troubling. My visiting nurse was concerned with the way I looked and
the amount of blood in the drainage and encouraged me to go to the hospital. My
husband agreed because he was afraid that I would worsen during the night. So
off to Roger Williams Hospital ER we went. I was triaged quickly, an IV started
with blood tests drawn and Xrays done of the chest and abdomen. My surgeons
were in the OR that day so they were able to examine me in the ER. It turns out
that what was happening was a physiological event. When a blood clot, the size
of which I had in the abdomen, contacted healthy internal organs and tissue,
there was a chemical change in the clot from solid to semi-liquid, and this
liquid had found a way out. Again better out than in. So we left the ER 5 hours late reassured that
the drainage was not dangerous and I set my mind to trying to manage it instead
of worry about it. Two weeks after this ER visit and right before I would
attempt to go back to work a few hours a day, I experience a large amount of
clots coming from the drainage opening in the groin. I had wiped away close to
6 or 7 large clots when in the next large clot I saw a very long suture
attached to the end of the clot. This little instigator was probably the cause
of the hematoma. Apparently a suture let go right after surgery, which in
retrospect caused the hypotension the night of surgery and the large hematoma
discovered the next day. I continue to be amazed at the recuperative powers of
the human body.
It was also at this point that just like in grieving the
death and loss of a loved one, a cancer patient begins to grieve for the life
they once had before the diagnosis. Most often, when I write, it is because I
am strongly inspired to do so. It is like if I don’t put this inspiration into
words, it might just explode in my head. So I set out to write a “dear John”
letter to melanoma. It went like this:
Dear Melanoma, you
UGLY EVIL BEAST,
When we first met 2 ½ years ago, you tried to rob me. You
tried to rob me of many things. First and foremost you tried to rob me of my
health. You tried to rob me of a future. You tried to rob me of my peace of
mind. You tried to rob me of my happy life. You gave it your best effort but
despite the disfiguring surgeries, 13 in all, despite the toxic poison that was
pumped into my body everyday to try to fight you and despite the everyday
overwhelming worry that you would come back, I didn’t let you win. Despite the
constant invasive testing and toxic contrast mediums that were pumped into my
body to monitor that you were gone, you didn’t win.
After 2 ½ years I was finally learning to live in peace and
to look forward to a full life. My New Years resolution was to live the best
that I could without thinking that you were right around the corner to halt me
in my tracks. I vowed to concentrate on living instead of being in constant
fear of your reappearance.
And then, on Valentine’s morning, you UGLY EVIL BEAST, you
decided to rob me again. This time, because I had spit in your face on our
first meeting you decided to up the ante. The evil that I had feared for 2 ½
years was realized. You left a sign to scare me and to change my life yet
again. I discovered a very large lymph node in the area of the original
sentinel node biopsy site. To be totally honest, your gift left me faint. I
knew with all my heart and soul what you were trying to do. This time, you were
trying to strip me of me quality of my life, the functionality of my body and
my psychological wellbeing.
This began an intensive 2 weeks of extremely invasive
diagnostic tests to see how serious you were this time with the invasion of my
body. From ultra sounds, to FNAs (fine needle aspirates), 4 CT scans all with
contrast and an MRI of the brain, my team of Doctors was certain of your EVIL
intentions. You had taken up residency in my lymph nodes in the right leg. This
was a blow too strong to endure. Our only option to fight you, you UGLY EVIL
BEAST, was to remove as many lymph nodes in the right leg and abdomen as
possible. A surgical date was set. At the same time, I experienced an
awakening. It suddenly dawned on me that YOU UGLY EVIL BEAST, might just win
this time and there was much that I needed to do to ready myself, my household
and my family, just in case I didn’t survive. So the week before surgery was
busy with getting my house ready to be without my attention for awhile, to
cooking meals for my beloved husband while I wouldn’t be able to for the time
of my recovery to the nasty distasteful task of seeing to the legalities in
case of my demise. A will was drawn up, as well as a medical proxy.
One of the most difficult discussions was reserved for my
precious husband and children and twin sister and brother. I waited until all
of the tests were completed and I knew how I would have to fight you, you UGLY
EVIL BEAST. It made my heart so heavy to know that they would again worry about
loss and that loss would be my fault.
So the surgery to rip you from my body again was March 7th.
This was by far, the most devastating surgical procedure to date. The incision
line extends from mid thigh to my waistline. There are drains to minimize
swelling. I never thought that I would be at a loss for descriptive adjectives,
but indeed I am. There are no words known to man to describe the depth and
severity of the pain you caused this time, you UGLY EVIL BEAST. 17 lymph nodes
were removed and 2 were metastatic, which meant you were serious about this new
assault.
As I write this, it has been 16 days since my Surgeons
removed you again from my body. But even though you have been removed you have
raised the ante. Because there is no way to know if or where your
micro-metastasis are located, toxic treatment will begin anew after recovery
from this most recent devastating assault. And again this new treatment will
rob me of my health and quality of life. All of this to prove to you that you
are the UGLY EVIL BEAST THAT YOU ARE.
It is my promise to my husband and children and family that
I will fight you, you UGLY EVIL BEAST until my last breath…and this time I will
not waste a moment worrying whether you will be back. I will be readying myself
for the next battle.
Writing this letter was very therapeutic. These thoughts and
feelings were screaming to be put on paper. After unburdening myself of these
thoughts and feelings, my recuperation went into high gear. I was again
performing daily duties such as light housework, and cooking and even shopping for
a few groceries. During a visit with my Dr. Katz, who I had been seeing weekly
because of the complications, I asked him if I could go back to work. He,
knowing me as well as he did, decided that he would leave that decision to me
as he trusted my judgment on the matter.
So when I attended my next visit with him and he asked if I had decided
to go back to work, I told him I had been back to work for a week already and
working full time. He was amazed at my progress of just one month. I told him
it was due to his God given talents, the power of prayer and a positive
outlook. He added one more fact, that because failure was not an option for me,
that recuperation was complete.
As I write this, I am 8 weeks post-op. I have been back to
work for a month full time. It has been challenging to say the least but
wonderfully healing and therapeutic all at the same time. There are many more
challenges ahead of me because of this diagnosis and surgery. I must start
chemotherapy again shortly. Of all that I have been through I
dread this the most. It is the unknown that has always scared me motionless. Hopefully
after I have my first treatment under my belt, I won’t be so fearful.
I will also live the rest of my life with lymphedema of the
right leg and the abdomen. This is caused by the removal of the lymph nodes,
which are responsible for the control and elimination of excess lymph fluid. I now
have to wear compression stockings on the right leg and will soon receive a
compression pump system which I can use at home that will help control and
eliminate the excess fluid and avoid secondary problems of pressure ulcers.
But it was a statement by one of the Surgeons that I work
with everyday that made one of the greatest impacts on me and motivated me to
sit down to write this narrative. When I tried to describe the pain that the
surgery had caused and I lacked the descriptive adjectives to adequately do
that, he said something that initiated an awareness in me. He said “I have seen
many of my cancer patients in severe pain, but I truly don’t know what they are going
through because I have never experienced severe pain myself.” My mind immediately went back to sitting in
the wheel chair at the nurse’s station waiting to be discharged from the
hospital. The nurse had just told me that the doctor instructed me to get off
of the pain medication as soon as I possibly could. I felt once again how angry
I was at that statement after looking at him and seeing how strong and healthy
he was, and just now being able to understand that anger. I was angry because I
knew he had no ability to understand what my 3-year journey had been like.
Despite his years of education and intensive training, no one can truly
understand the changes of lifestyle, the degree and severity of pain and the
mental anguish that a diagnosis of metastatic cancer can cause not only the
patient but, that patient’s entire family and support system of friends. And
this understanding of my own personal anger’s origin brought about forgiveness.
And this forgiveness brought about the need to want to teach those that heal,
the true art of compassionate healing.
Healing pain in the body, in the mind and in the soul are equally
important. This is a lesson that must be taught to even the most seasoned
cancer specialists.
