Tuesday, January 24, 2017
So Much More than Melanoma Survivor: A visit in Hell
So Much More than Melanoma Survivor: A visit in Hell: It has been almost a year since this convoluted journey of metastatic melanoma took a side trip through hell itself. My last posting afte...
A visit in Hell
It has been almost a year
since this convoluted journey of metastatic melanoma took a side trip through
hell itself. My last posting after a
body image, life altering, devastating surgery to remove all the lymph nodes of
my right leg, groin, pelvis and abdomen pales at the further health crisis and
challenges that were to lay ahead. It is truly a blessing that these facts are
not known. Although, that said, my decision to continue treatment with a newly
FDA fast tracked adjuvant therapy might have been quite different had I known
how my body would react. As I contemplate the year and strive to remember every
detail in the effort to teach and share experiences, it is still unknown
whether any of the treatments or resulting medical, physical and emotional holocaust
has done any good in buying me time or preventing further progression of this
deadly cancer.
The devastating
lymphadenectomy took place March 7, 2016. Recovery was fraught with
complications from a compressed abdominal hematoma that extended the girth of
the abdomen causing it to double in size, to open weeping wounds that would
eventually take months to heal. The pain level was intense but once adequately
controlled, lessened quickly. And as in the past, my main focus was to return
to as normal a life as possible. For me, that meant returning to work quickly.
Four weeks later, to the
astonishment of my surgeons and oncologist, I was again working full time.
Although true normalcy had not returned as far as energy level and what I was
able to accomplish in a day but I was back at work.
Slowly, my strength and
ability to partake in life returned to what I considered an acceptable level.
My husband and I were able to occasionally go out on our date night, which
always was a joy. This grace period of partial normalcy was soon to end.
After my wounds had healed,
we were now ready to discuss the options available at hand to try to prevent
the beast from spreading further and becoming stage 4. In November of 2015, a
new therapy called Immunotherapy, and a drug named Yervoy (Ipilimumab) was fast
tracked by the FDA for adjuvant therapy for metastatic melanoma. Adjuvant
therapy is defined as a therapy initiated to hopefully prevent progression of
stage 3 metastatic diseases from becoming stage 4 disease. Although it does
show promise in this capacity, because of the short amount of time in use, hard
clinical data was not voluminous.
A patient’s ability to
tolerate this drug is truly a crapshoot. In the spectrum of experience, some
patients are able to tolerate it well and to complete the 3-year regimen that
is needed to insure an adequate and hopefully positive treatment outcome, while
other patients have died after just one dose. This was a frightening fact in my
personal research. And although the gravity of my decision should have been
starkly black and white, the concept of dire consequences didn’t even enter my
thought process. The only facts that I could recall when the decision was made
to move forward with this new therapy was something my doctors had said, “this
may give you time!” So a date was set to begin these treatments. To achieve the
maximum benefit from the adjuvant therapy however, the dose is raised to 3½ times
the treatment dose, in essence a toxic and dangerous prospect. The treatment dose
of Yervoy is 3mg/kg of body weight; the adjuvant therapy dose is 10mg/kg of
body weight, increasing the possibility and likelihood of toxic side effects.
Side effects are categorized as grades 0-4 depending on the severity, 4 being
life threatening with the highest potential for life long disability.
As in the past, my first
thought always was of my work. As is true since my Nursing profession began, my
work is not just what I do, it is an integral part of who I am. This feeling of
intense responsibility not only to my patients but also to the wonderful team
of physicians that I work with has always been the first thought when recovery
time was contemplated. My first words to my surgeon, Dr. Steven Katz was
always, “when can I return to work?”
Because failure to return quickly was not acceptable to me, it was
thought that this was my fuel to stay positive and recover with amazing
quickness. This premise and theory would be put to the ultimate test in the
months to come.
The time for the first
infusion was drawing near and again; the planning and timing of these infusions
were booked around the least impact to the practice and to my patients. It just
so happened that each of the first 4 infusions, to be administered every 3
weeks fell on a holiday weekend, allowing me an extra day off before having to
return to work. So only one day was missed in my regular work schedule.
I truly missed the entire
summer. Every holiday was spent in bed recuperating from the latest infusion.
Although well enough to go to work, there was a constant feeling of severe ill
health that is so wide ranging that to try to enumerate each and every symptom
would have been impossible. During this time also, other pitfalls presented
themselves. Developing shingles after the second infusion of Yervoy seemed a
particularly nasty slap in the face. Not only ill from the infusion but now the
added illness and pain caused by this infection was really too much to bear.
This occurred 2 weeks before we were to leave on our much anticipated and
needed yearly vacation on Martha’s Vineyard. This is the one vacation that has
always been not only enjoyed but restorative to mind, body and spirit. This
year it was none of the above. Illness, physical weakness and mental anguish
surrounded me like a veil I couldn’t escape from. Upon our return home, there
were 2 more infusions at three-week intervals. It was my goal to complete the
first 4 infusions. It is stated in the clinical trials that the most important
of the infusions are the initial loading doses of 4 infusions every 3 weeks.
The therapy then continues for 3 years but infusions are administered every 12
weeks. It was a personal victory for me to have achieved these first 4 doses
and to know that I would only have to return every 12 weeks was encouraging. I
thought that I just might be able to complete this therapy with the greatest
hope of buying me a gift that money can’t buy, TIME.
The 4th infusion
was given on the Friday of Labor Day. Again, because of the holiday weekend
there was an extra day to recuperate before returning to work. As it happens we
had another vacation that had been planned and paid for 18 months prior to
learning of the recurrence of my disease. We were to travel with my oldest
friend and her companion on a cruise of the Canadian coastline. Although we
have been best friends for over 40 years, we had never vacationed together and
were both looking forward to this with great anticipation. So, although not
quite myself, I started the preparation and planning of the trip. The week
prior to leaving I visited my Oncologist, Dr. Vincent Armenio and my Internist,
Dr. Vanessa Greenier, both giving me the green light to embark on this next
adventure. I seemed healthy and my weekly blood work was mostly within normal
limits. We boarded the ship docked in Boston Harbor on the last Sunday in
September, looking forward to seeing the lovely Canadian coastline and enjoying
the fun on board ship. Little did we know that this long awaited and
anticipated journey would take an almost deadly turn.
Sunday and Monday were
pleasant days on board ship. We were at sea and the sky was cool and crisp with
the smells of autumn. On Tuesday the weather turned inclement and the wind
picked up considerably. I am a fragile sea-goer and easily prone to violent
seasickness. For this reason I embark on cruises with a great respect for the
use of anti-emetics which I had with me. By Tuesday evening, feeling
particularly unwell and attributing this to the rather raucous movement of the
ship, I excused myself from our dinner plans and was escorted back to my room
arm in arm with my best friend and protector. Once deposited in my room I
quickly found the safety and warmth of my bed soothing and feel fast asleep.
That was day 2 of an 8-day cruise and the last day that I would leave my room
and the safety of my bed. That 2nd day at breakfast, was the last
food I ate for the remaining 6 days of the cruise. Although knowing somewhere
in my half conscious state that I must maintain adequate hydration, the quest
to drink water was always paramount in my thoughts. As the days wore on, I
became more ill by the hour. In my recollections of this time as I write this
narrative, I now realize that I was close to a semi conscious state. I would
become aware of my surroundings and people in the surroundings in small snippets
of time. I can vividly remember telling my dear husband that I was going to die
on the ship, truly believing this to be fact and feeling the depth of illness
one must feel when near death. One evening I awoke to my best friend sitting on
the bed next to me telling me to hold on and that we would be home soon. I was
so sorry to be putting my husband and my dearest friend through so much. To
have to watch me decline so quickly was truly horrific.
Finally, our ship entered
Boston harbor early morning on the first Sunday in October. For anyone who has
taken a cruise and know the difficulty of quickly disembarking this vessel can
relate to our immediate need at hand. Both my husband and my friend and her
companion took off in different directions in search of crewmembers that could
assist and expedite our departure. Because this was an international cruise,
the added delay in coming through customs was a great concern to us all,
although I was pretty much unaware of my circumstances and surroundings, I knew
how I felt and also knew that I couldn’t hang on in a conscious state for too
much longer.
With everyone’s efforts, crew
members were commandeered along with a wheel chair and the escort of my best
friend’s companion Ed acting as ramming rod to get me through and around the
lines of waiting people in front of us, we left the ship in a mere 15 minutes.
The crewmembers and the custom workers recognized the gravity of our situation
and allowed us all to pass through without inspection. Additional crewmembers
were awaiting us on the dock to expedite our luggage and assist in getting me
into my husbands waiting car. The trip from Boston harbor to Roger Williams
Medical Center took my husband 50 minutes to achieve. His thoughts were that if
police detained us, he would ask for their assistance in getting me to my
medical destination. I reclined in the front seat with my friend hovering over
me from the back seat as best she could, always speaking to me calmly and
clearly to hold on and that we were almost home.
The relief of arriving at my
medical home away from home became a security blanket that wrapped me in the
knowledge that I was safely in the hands of people I trusted with my life.
Although I remember nothing of the ER treatment center and the testing
required, I do remember the relief of knowing that I could relax and let those
that I trusted without doubt, to take over the task of helping me through this
latest insult. My first memories of this hospital stay began on day 3. I awoke
to 5 physicians surrounding my bed. One of the team had stated that I was lucky
to have the A team with me that day. Although I knew where I was and that I was
acutely ill, I truly didn’t understand the gravity of the situation. I felt
like death must feel like itself but didn’t have the strength or the conscious
state to fathom the details that this “A team” was trying to explain.
I was told that my liver had
failed and that the fact that I left the ship even in a semi conscious state
was indeed amazing. Liver failure to this degree rarely leaves the patient
conscious. It is indeed a testament to my thick headedness as I’ve been told so
many times by my physicians and that failure and defeat is not an option.
It was at that visit that I
was told that the new chemotherapy must be discontinued and that it would no
longer be an available option for me in any form. I was aware enough to realize
the gravity of these words and told the physicians that we needed to have a
frank discussion regarding my future medical decisions. I shared with them the
degree of illness and disability I was experiencing and that if this was the
best that I could hope for then I would now be forced to make some very
difficult decisions about the course of all future treatment. One of the team
stated that although the therapy had to be discontinued, he fervently hoped
that the amount of therapy that I had already received might be enough to give
me some long term positive results and that we must give the liver time to see
if any of it’s functions would return. As a metastatic cancer patient, I am not
considered a transplant recipient patient any longer. So with a failed liver
and not knowing if the functionality would return coupled with the fact that
chemo must stop, my mind and heart started on a deep and dark decent into a
black and scary place in my being. In my 64 years of life, I had descended into
this dark black pit of despair and fear only 2 other times, once during a
particularly stressful personal crisis in my younger years and once when faced
with the loss of a very dear friend and mentor to gun violence. The journey out
of the black hole was slow and torturous but was achieved, again, by sheer
strength of will to survive and go on. I
must also tell you that I truly believe in the power of prayer and my belief in
God and Jesus as my savior and a devout love of his Holy Mother Virgin Mary has
seen me through some very difficult times. I also fervently believe in the aid
of Guardian Angels. However, during the 2 previous times of intense inhabitance
of this all encompassing black place, there came a moment of total peace, a
peace that was felt to my core. On one occasion I felt this peace enter me from
the top of my head and spread to wrap me in the warmth of light and
tranquility, after which my slow ascent into the world of life and living began
anew. It was my fervent prayer that I
would again be given the gift of this healing peace to help in my decisions that
would have to be made and to accept without question the path that God had
planned for me. At the date of this writing, I have sadly not received this
gift of peace, which has made this part of the journey so much more difficult
to traverse.
Again, my first question was
when could I return to work. The physicians of the A team informed me that
returning to work was not advisable seeing that I was a healthcare provider and
the dangers of me getting ill were too great a risk. I acquiesced and agreed to
not see patients for one month. They insisted that I wait until I was off of
the high dose prednisone that I would now start taking in the hopes of
preventing further system failure. Commonly the liver fails first, then
followed by the adrenal cortex and the kidneys. The prednisone’s duties are to
support these systems with its anti-inflammatory properties to avert further
failure and damage. This was the only treatment available for the liver failure
and one that would wreak havoc with my body. I did return to work full time in
one month despite my liver failure. It was a decision I would soon regret for
the severity of it ramifications and degree of incapacity of my whole being.
Prednisone is a miraculous
drug. Despite its miraculous nature, it is a toxic and multi-system side effect
devil. And the toxicity is dose and duration dependent. At lower dosages, it
can be well tolerated for short periods of time. Usual doses are 10mg a day for
21 days. I was receiving 100mg per day and this dose continued for 5 weeks. At
this point titration down in dose took place in increments of 10mg each time.
So my next dose of 90mg per day lasted almost 4 weeks. These decreasing
titrations were determined by blood tests for the liver. Each week blood work
was done to monitor the liver enzymes. These system markers indicate the
functionality and hopefully the recovery status of the liver. Much to Dr.
Armenio’s shock my liver numbers were astronomically high. This indicated a
still failed liver without evidence of improvement or recovery. One of the
markers is called bilirubin. The normal range for bilirubin is 0.02 – 1.0. My
Bilirubin, at it’s highest was close to 15. AST and ALT norms are 40-60, mine
were 1600. These numbers and the lack of improvement necessitated a referral to
a liver specialist. During this time, approximately 6 weeks, the liver markers
were closely monitored but did not recover and remained dangerously high. After
a particularly difficult day with work and blood tests and discussions with
physicians I had finally gone to bed just to be woken by a phone call by my
oncologist. It was the week before thanksgiving and he told me that he could
not wait any longer to address the issue of the liver and that if we were to
save any part of it I would have to be admitted to the hospital and treated
with an experimental therapy that only a few in the world had received. This
was devastating news. He said that he wanted me to repeat the blood work that
was done that day, on the next day, and that he would call me with the details
of my admission.
I went to work that next day
with a very heavy heart and was distraught at the fact of having, once again,
to put my work and patients at a disadvantage. I prepared my office and other
nurses to be without me for an unknown period of time and spent the rest of the
day in anticipation of what was to become a very bleak thanksgiving holiday.
Now I’ve admitted to being deeply spiritual and believing in the power of pray.
I had and still have a virtual army of people I know and those I have never met
praying hard for a good outcome. The power of pray was again proven to me that
day. At about 3 pm the dreaded phone call came that I had been waiting for. It
was Dr. Armenio, but he seemed a little disconcerted. He stated that he had
just received the results of that morning’s blood tests and could not explain
it but my liver marker numbers had dropped 500 points overnight. Now, keep in
mind that for almost 8 weeks these numbers had only moved higher without any
evidence that they would come down anytime soon. He had spoken to the liver
specialist who mirrored his opinion that I might just have dodged the biggest
bullet of my life. To say the least I was ecstatic. They would delay admitting
me and continue to monitor the markers in the hopes that they would indeed
continue to decline. They indeed did and at this writing are all now within
normal limits. This is nothing short of a miracle. Just when I thought I could
see the dim light at the end of the tunnel, new devils would invade my
recovery.
The liver and the pancreas
work very closely together and are influenced by the illness of either organ.
This was proved to be true in my case as the liver failure and subsequent use
of high dose prednisone now made me an insulin dependent diabetic. Although the
doctors reassured me that once off of prednisone this secondary diabetes would
cease, it meant that yet another chink in my treatment would have to inhabit my
already distraught and dangerously overloaded brain. So the duties of
monitoring blood sugars 4 times a day and adhering to a strict diabetic diet
and lastly the administration of insulin 3 times a day became yet another duty
and responsibility to digest.
Once
released from the hospital after the diagnosis of liver failure, above and
beyond the obvious consequences, I started to have disturbing and sometimes
disabling symptoms. To describe these symptoms is a very difficult task. The
symptoms seemed to wax and wane during the day at different intervals without
warning. Because of my need to analyze and understand all things medical, I
became more aware of these events during the day in the hopes of trying to
prevent them or at least diminish their outcome. It felt most days that I was
walking within a veil-draped space; the lights of this space were dimmed to
half brightness. I started to think that maybe being new at the diabetes game
that this was a manifestation of blood sugar. But blood monitoring proved that
this was not the case. Then I thought that maybe it had to do with the use of
the high dose prednisone, but prednisone has a very short half-life in the body
so if this was true than this symptom of veiled dimness could not be attributed
to the prednisone as it occurred even later in the day. Just to keep things
interesting, this feeling of an altered half veiled existence was joined by an
increasing muscle weakness. I was unable to rise from a chair without the
assistance of a table. My gait became unsteady and I would frequently “walk the
wall” of my office. This was achieved by leaning against the wall to support
myself so I wouldn’t fall. It became increasingly evident that I was not safe
to walk unaided and started to use a cane to insure against bodily injury due
to a fall. These troubling symptoms occurred slowly and with increasing
debilitation. One morning in mid December, I readied myself for work as usual
but when I attempted to walk down the stairs from my bedroom to get into my
car, I realize that I really didn’t feel right, but got in the car and drove to
work. By the time I had reached my destination in approximately 20 minutes, I
knew I was in deep trouble. I was experiencing excruciating abdominal pain and
weakness so severe that I could not support my weight. I was frightened beyond
rationality and knew that something was very wrong. I am a very independent
person and it is hard for me to ask for any kind of help but when I reached my
office I called in one of my nurses to get to the office as soon as possible
and asked one of our medical secretaries to take me to Roger Williams Hospital
emergency room. Because of the abdominal pain and its specific location it was
thought that fluid around the liver and gall bladder had increased and that
possibly the gall bladder was now a present danger. After testing was completed
which included CT of the abdomen, blood cultures, chest x-ray and HIDI scan it
was determined that there were no stones blocking the bile ducts and after 11
hours in the ER was discharged to home with prescriptions for Percocet for the
abdominal pain and Zofran for the nausea. After being in the ER for 11 hours,
my bed was a welcome oasis of comfort and warmth. I remained in bed the next
day to allow rest and medication to work its magic. At 9:30 that evening I
received a phone call from my surgeon’s team stating that we had to discuss the
blood cultures obtained the day before. I told him that I had an appointment
the next morning with Dr. Katz and this would be discussed then. Being a Nurse
I knew what a discussion of blood culture results would mean. I would have to
be admitted with the diagnosis of sepsis, which in my case is a very nasty complication.
So indeed, I was admitted to my medical home away from home for the second time
in 2 months, this time to be treated with powerful antibiotics in the hopes of
preventing the progression of the sepsis. IV Vancomycin and IV Zosin were
started. These are very powerful antibiotics with equally powerful side
effects. One of the side effects is uncontrollable diarrhea. Thus began a 7week
battle with unrelenting, debilitating diarrhea necessitating the use of
disposable undergarment protection. I am admittedly a very proud woman and for
me to admit that to this day I am still in the need of these garments gives me
angst and embarrassment beyond measure. And yet, this was not the most
troubling symptom. Upon my discharge from the hospital, I was sent home with
another 14 days of antibiotics and instructions to rest and do nothing else.
The last part of the instructions was easy to comply with, as I had absolutely
no strength to walk or navigate stairs or even dress myself. So the next 2
weeks were passed upstairs in my bedroom with my poor husband navigating the
stairs to help me with whatever I had to do to wash and change bed clothes and
linens and to deliver whatever food he could force me to eat which was very
little indeed. I had already lost 35 pounds in a very short time frame. More
disconcerting was the fact that my strength was not returning at all. I
remained as weak as an infant without the strength to even comb my own hair.
For the first time in the almost 4 years of multiple doctor and hospital and
laboratory visits, I cancelled all pending appointments with the knowledge that
physically I could not even attempt to get ready for these visits let alone
attend them. I would concentrate on rest and pray for the return of some of my
strength. These prayers remained unanswered. On one of my most desperate and
despairing days, I truly felt as if I were an empty vessel, devoid of spirit,
stripped of the ability to think and to even move facial muscles. I was a
frozen blank stare without soul or substance. By the grace of God, that
complete depth of despair only occurred once. I have had many subsequent
horrible days but never to the degree that left me speechless and motionless
and devoid of soul. This weakness persists despite the healing of the liver and
the now discontinued use of insulin. So progress has been made but the
lingering weakness and digestive symptoms continue to keep me almost totally
housebound. I have experienced some improvement in my thought process and
ability to concentrate. I will admit to being a very impatient patient. I want
to be well and back to as normal a life as I can hope for given the
circumstances and for the first time in my life I am not in control of this
timeline. I am at the mercy of my weakened muscles and plagued with its
accompanying shortness of breath in everything I endeavor to achieve. I am
forcing myself to do a little more each day that I feel well enough. Getting up
everyday and dressing and coming downstairs is a must both mentally and
physically. Trying to increase activity to include light housework and the care
of my beloved plants has helped to keep my mind off of the possibilities that
may lie ahead. So in retrospect, although thinking that a return to work and a
life as normal as possible is my best medicine, I have had to take a hard look
at the reality of my circumstances, and have had to now focus on getting as
well as I possibly can for as long as I can and not worry about how long this
will take me to accomplish. I admit to being as frustrated as I have every been
in my whole life but my reality dictates that now, I must allow my body to heal
in its own time, not mine.
It
has been determined that all of these distracting, debilitating and confusing
symptoms are caused by the use of Yervoy. For me it was a virtual poison. It is
so frustrating that the potential savior treatment can indeed be more lethal
and problematic than the disease itself. I continue to live in hope that recovery is
just around the corner and as has been true in the past, once recovery begins
it will progress quickly but this may not be my reality.
As I
write this addition to the saga, I am awaiting diagnostic testing to determine
if any of this year of hell has made a difference in the progression of my
disease. A PET scan and MRI was ordered and denied by my insurance company. So
a subsequent request for a CT of the pelvis, abdomen and chest and again an MRI
were approved just yesterday. These tests will determine if the beast is quiet
or if it is again mounting an offensive against me tired body. I continue to
believe in the will of God Almighty and although I do pray for healing, I also
pray for the strength of mind and heart and spirit to accept what is to come
not matter what the circumstances.
Sunday, October 23, 2016
10/23/2016
As I sit quietly in this melodious pre-dawn hour that is now
my reality, I hear the deep tubular music of my cherished wind chimes. Nature
is providing the power to soothe my soul. It is a perfect meditative climate. I
have learned to embrace this new waking hour and appreciate the total quiet and
peace that is the middle of the night. Surrounded by all the worldly
possessions that make this a cozy and inviting place to recuperate yet once
again from my ever-present nemesis that is the Beast Metastatic Malignant
Melanoma.
To admit that the 6 months since the Beast returned has been
challenging is such an understatement as to be Ludacris. With each new assault
on this newly made fragile existence, I am reminded of just how precious life
is and the value of continued hope, struggle and commitment to WIN THIS BATTLE.
But with each new assault, there is a dear price paid. With each subsequent
attack and the resulting attempt at normal, the pieces that break away from the
central ME are broken smaller and smaller and just like Humpty Dumpty, much to
difficult to put back together in the original formation. This wage is paid not only by me, but also by
my whole support system that is inclusive of my precious family, Husband, my
dear friends, healthcare team, co-workers and yes, my patients. There is a
saying in our cancer corners that “no one fights alone”. In my case this is so
true. There is virtually an army of support and caring and assistance at every
hairpin turn of this convoluted existence.
But there are so many Blessings to recognize in this
continued battle also. I am blessed to have been diagnosed at a time when
cancer treatment has taken on a new urgency to find a cure. In this surge of
collaboration of the greatest minds in medicine, the newest and most promising
treatment modalities have been trialed and fast tracked for those of us in
desperate need of miracles. If my diagnosis had been made a mere 2 years prior
to my actual diagnosis, the chances of still being here to write this would be
slim. There exists, however and again, a price to be paid for this essentially
new and experimental treatment. We risk our very existence and quality of life
in search of the elusive cure. This above anything else has been the one
dilemma that troubles my mind.
Most amazing is the body’s healing abilities after an
extensive and devastating surgery. The most recent surgical procedure to rid my
body of the Beast Invader included removing as many lymph nodes from my right
thigh, groin, pelvis and abdomen as possible in the hope of stopping the
relentless progression of this disease. This left a surgical defect that measures
18 inches from mid thigh to just below my waistline. Visions of a carved turkey
come to mind at this moment. Recuperation from this devastating assault
actually happened quicker than I expected and was able to return to work and a
pseudo normal life in 4 weeks. Even my healthcare team was amazed.
At this juncture, there was a lot of discussion about “where
do we go from here?” As it stands, in November of 2015, the first adjuvant
therapy was approved for use by the FDA for stage 3c metastatic melanoma. The
theory behind this treatment modality is to try to enlist the immune system in
recognizing and eliminating any stray metastatic cells throughout the body. It
is indeed a wonderful theory. It is in fact, for some of us, a brutal
treatment. And it is because of the all- encompassing dreadfulness that
accompanied this treatment that I call this summer “the summer that wasn’t”.
Adjuvant therapy is initiated within a 12 week time frame
after the surgical procedure, so for me, the weekend of Memorial Day was my
first infusion. Along with my healthcare team and with my own professional
schedule in mind, it was decided that my infusions would take place on a
Friday. This would ultimately give me 2 days to recuperate before returning to
my patients on the Monday. Again the theory makes sense but the body sometimes
doesn’t cooperate.
First, let me admit that the staff of Roger Williams Cancer
Center have been by far the most supportive, compassionate partners in my quest
to get well. From Mary Grande, RN, Doreen Thomas, LPN and all my treating
physicians that would drop by the infusion room to say hello and offer
encouragement. It may seem trivial to some but they mean the world to me and I
am so grateful to have experienced on a personal level their dedication.
Because of my personal track record of not handling chemo
very gracefully in the past, each infusion of Ipilimumab (Yervoy) was preceded
by infusions of Emend and Zofran for nausea and vomiting and Benadryl in case
of reaction. The block time of infusion was approximately 4 to 5 hours. The
treatment room is comfortable and as cheery as such a place can be, but it is
indeed a long 4 to 5 hours. Of course, for me, I am blessed with a husband with
the unlimited ability to make me smile and laugh even at the most outrageous
times. Unknown to me at the time of my first infusion, my husband and I were
being observed by a nurse I had not as yet met. As the infusion came to an end,
despite my degree of fatigue, my husband kept me laughing. This new
professional face came to our section of the infusion room to comment, “ I can
see the twinkle in his eye, is he always like this?” I just smiled and said
yes, he never looses his smile or his love of laughter. When she remarked that
“ it is quite something to witness”, I knew this was rare and I was indeed
blessed.
Because it was the first holiday of the summer I had an
extra day to recuperate before returning to work. As the days wore on, I was
pleasantly surprised that I had not only survived the treatment but seemed to
tolerate it pretty well. You know the old saying “that shouldn’t have just come
out of my mouth!” Things were about to get interesting. But first, let me
explain this miracle chemo and its’ dosing. The treatment dose of Ipilimumab is
3mg per kg of body weight infused every three week. The adjuvant dose of this
chemo is 10mg per kg of body weight infused every three weeks for 4 doses and
then continued every 12 weeks after that for 3 years. This is 3 and ½ times the
treatment dose. It is the theory that the toxically high dose will stimulate
the immune system into ultra high gear to fight the invader that was stealing
my body. Little did I know that the true challenge was about to begin. The first signs of trouble began with
swelling of the face. This was not a pretty picture but I needed to show the
changes that occurred
3 weeks later, when my next infusion was due, I awoke during
the night with severe head pain and vomiting. I couldn’t sit upright, and felt
very ill. Naturally I called my Oncologist Dr. Vincent Armenio who instructed
me to remain in bed and we would see each other the next week and reschedule
the infusion for the next Friday. The head pain and vomiting started to subside
by Sunday but a mysterious full torso rash appeared. Along with this rash was
also an intensifying feeling of illness and severe pain. When I finally say my
Dr. Armenio, he diagnosed me as having shingles. This couldn’t have happened at
a worse time. And in my attempt to understand all things medical, I couldn’t
wrap my head around a heightened immune system allowing shingles to take hold.
So, further infusions were delayed until the shingles resolved. During this
whole time, it was very important to me to maintain as normal a life as
possible, not for me so much but for my precious husband and family. So the
plans that we make for our summers which I love, such as a weekend in Ogunquit
to see our dear friend Andy and Melissa and Charlie, and our Vineyard vacation
which has always been not only a blast but also very restorative to my soul were
scheduled and attended. It wasn’t pretty and most days I just was there without
being there. I know, tough concept to understand. It is an amazing discovery to
learn that your body can indeed be in a physical place, but your mind and soul
are somehow disconnected and not present.
After all the shingles shenanigans had healed, I was ready
to begin anew with our attempt at adjuvant therapy, albeit scared silly. Infusion day came and went and my tolerance
was pretty good. I was able to return to work on the Monday after the infusion
with some discomfort and fatigue but was able to carry out my professional
duties appearing no worse for wear. I started to feel encouraged. Maybe, just
maybe I could do this. I had shared with my Dr. Armenio that it was my present
goal to make it through the first 4 infusions, which were the most important of
the treatment modality, and then to take it one treatment at a time after that.
He agreed with this mindset.
The third infusion was again set for a holiday weekend. And
again, this gave me an extra day to recuperate before returning to my patients.
This treatment turned ugly very quickly. I refer to these recuperative weekends
as lost weekends. They would be spent in bed or quietly at home. On the Tuesday
when I returned to work I knew I was physically in trouble but persisted and persevered.
What I didn’t realize is how badly I looked. The physician that was in the
office with me that day stopped by to see how I was fairing and stopped dead in
his tracks when he saw me. Asking what he could do to help and encouraging me
to go home to bed where I belonged. I thanked him for his encouragement but I’m
nothing if not stubborn and thick headed and refused to go home. This treatment
initiated 13 days of hell. I have been a migraine sufferer since I was 12 years
old. I’ve also experienced cluster headaches. Cluster headaches are migraines
times 100 with the added attraction of copious amounts of nasal drainage. You
truly feel as though you are drowning and you brains will explode all over the
walls. As the days wore on the headache started to subside and just in time
because yes indeed, it was time for the 4th infusion.
I could see my goal in site. The 4th infusion was
again set for a holiday weekend, Labor Day. Although frightened beyond
description, the infusion went well and low and behold, I felt as though I had
no reaction to this victorious 4th insult. Oh how delusional I was
to even think this.
It was at this time that our final vacation for the lost summer
had been planned and paid for 18 months prior to this new health challenge. All
the while, I was monitoring the situation in the knowledge that cancellation
was a possibility. It was the first vacation that I would be spending with my
life long best friend. She is in a very happy place in her life right now and I
was looking forward to sharing this time and experience with her. We were to
cruise the Canadian coastline for 7 days. Having been to Canada a few times, I
have grown to love the beauty of this place and was looking forward to
experiencing the islands off the coast. The date of our departure was 3 weeks
after my 4th infusion. As the days wore on, I continued to feel well
enough to participate in this much anticipated get away and started the
shopping and preparation that was needed for such a trip. Feeling so victorious
in achieving my short-term goal of completion of the 4th infusion, I felt that
buying new luggage was in order. It was my hope that they would be used often
in the future. The old drab brown luggage was replaced with a vibrant royal
blue ensemble that in truth needs the aid of sunglasses to behold. My husband,
the always patient and understanding man that he is just remarked that they would
indeed be hard to loose. God love him.
What I failed to enter into my decision making process
regarding this final getaway was it’s virtual isolation and the inability to
seek medical help if it was needed. One never thinks of these often obscure details
until slapped in the face with their reality.
By day 2 I thought that I might be feeling the effects of
the busy 3 weeks leading up to this trip and decided that I needed a day of
rest. My friends left the ship to see other friends in Bar Harbor, one of our
many ports of call on this trip. As this day progressed, I knew that I had made
the right decision to be quiet, thinking that this was just the perfect
treatment that was needed. Oh God, how wrong I was. Noticing that I couldn’t
eat no matter how I tried, concern started to set in. Don’t get me wrong, I
attempted for the first few days to at least be present at the dinners even
though all I could manage was to pick at my meals. By day 3 all eating stopped.
Having the presence of mind to understand how important it was to stay as
hydrated as possible, I continued to force water as much as possible. From this
point on, the rest of the trip is nothing but a few memories and haze. I can
remember attempting to attend a specialty restaurant that we had booked just to
be supported arm in arm with my girlfriend who was my assigned escort back to
the room. That was my last attempt to leave the stateroom.
I fully understood the gravity of my situation. But knowing
you are gravely ill and accepting this fact are 2 distinct differences. Of
course, not knowing the particulars of this present crisis, I was blessedly
protected from the truth of the matter. It escalated so seriously and quickly
that my husband considered having me airlifted from Halifax back to the states.
I emphatically refused this offer as I felt that I would be stranded in a
Boston hospital for God knows how long. He also offered to enlist the
assistance of the on ship physician. Again, my thick headedness and judgment
screamed no and he agreed to try to wait until we docked in Boston. Waking up
on the Sunday of our return in Boston harbor was such a gift. I knew I was
almost home. By this time I was unable
to walk or even hold my head up. To say that my companions were upset and
worried is an epic understatement. My girlfriend would come to be with me while
I was in bed and I can remember apologizing to her profusely and telling her
that I wasn’t going to live to get off the ship. That is how ill I knew I
was.
On the day of our return to Boston, my husband enlisted the
aide of the cruise ship crew. They provided a wheel chair and expedited my
departure from the ship, skipping customs. Our departure was also aided by my
girlfriend’s partner. As is natural, there exist a population of people who are
oblivious to anything and anyone that interferes with their goal of departing a
docked ship. Thanks to his big voice and insistence that people move aside to
allow the ships crew to remove me from the ship, this was achieved in about 15
minutes. Anyone who has attempted a quick departure from a cruise ship knows that
this is a near impossible task.
The cruise ship arranged for help on the port. They assisted
in getting our car, loading the car, myself and my protective girlfriend
without delay. Our quest was to make it
home to Roger Williams Hospital. During this trip I was only partially aware of
what was going on. I do remember repeating my apologies and telling my dear
friend I was sorry for what I had put her through. I was reclined on the front
seat and she was sitting behind me with both hands around my shoulders urging
me to hold on. My husband, God bless him, made it from the port of Boston to
Roger Williams Hospital ER in just 55 minutes. He literally flew. My state room
was now a hospital room.
The rest of the next few days are nothing but a haze of
tests and treatments and innumerable medical faces. I was told that my
situation was very serious and that I was also being monitored because of
imbalances that could cause cardiac complications. When a treatment modality
was decided upon and medication initiated, I started to become more cognizant
of my predicament. My liver had failed. Normal Liver function tests would range
between 10-40, my numbers were in the 800’s. I was told that there was much work to
do and that recuperation would be slow. At this point in time, once high dose
prednisone had been added to my treatment modality, it was like a veil had been
removed and I could once again think and function to become a participant in my
recovery. That said, surrounded by the best health care cancer experts there
are, I was feeling the need for the discussion that was weighing heavily on my
heart. As my bed was surrounded by experts in the field, I told them that we
now had to have a discussion regarding the future of my health prognosis. I
voiced to all of them that IF my life was now going to be a combination of what
I was seeing at that moment, that I would choose to live the rest of my life
with dignity and that my fighting would cease. I refuse to allow my precious
husband and family and friends to experience futile attempts at an unachievable
goal. My health care team was honest and direct which I respected and admired.
There were no promises made, but it was their hope that we could regain some
liver function and that permanent damage might be minimized. This is an important factor because I am no
longer qualified as a transplant recipient. My metastatic status prevents such
attempts. My mind understands this but it is indeed a bitter pill to swallow. This
also has mandated a total cessation of chemotherapy. My body does not tolerate
it at all. In fact, I will be followed closely for many months to come. The
nature of the destruction of body systems does not begin and end with the
liver. This sometimes life saving treatment can also continue to cause system failures.
The next to be effected is the adrenal cortex, thyroid and then kidneys. So to
state that this situation is precarious defines logic. My options have now
narrowed significantly. I have been assured however, by my Dr. Armenio, that
the newest and more effective and less toxic treatments are just around the
corner. It is my fervent hope that I am able to take part in this brave new
world of cancer cures if that is my journey.
So after almost a week in the hospital, my physicians
discharged me to my home with reluctance. Although I am by far much safer at
home and isolated from the transfer of germs and infections, I am also not
right where I need to be if something becomes emergent. Now began the measures
to keep me safe from secondary infection, to rest and to try to let my liver
recover. My husband and friends and family have become guard dogs to the daily
do’s and don’t that occupy my every waking minute. My long time best friend
Janet made sure that while I was in the hospital that my husband had good
dinners to go home to. My twin sister Joan and one of my friends Marie Cirelli,
took it upon themselves to make sure my husband and I had wonderful nutritious
meals for the first 10 days that I was home. In all honesty, I was too weak to
have provided this for us and am so grateful for the selflessness of these
three wonderful women. But at some point, to recover, one needs to slowly and
gradually get back into the pulse of life. For me it was slowly but again, to
my amazement, daily duties were increasing as was my strength and stamina. Now,
don’t mistake this to mean that I was doing great. I gauge being able to slowly
climb my stairs to my bedroom a major victory. However, I am still restricted
from being in crowds, going to grocery stores and being with children.
As I sit here, now daylight, on this glorious Sunday, it has
been a very difficult 3 weeks. To this date my liver is not responding to
treatment yet. I have been reassured that this is not uncommon with the method
of action of this very toxic treatment. So I live each day and pray each day
for some of this function to return. Only time will tell to what degree this
will impact the rest of my fight. I have promised my family to NEVER give up
the fight if there is the minutest of chances for a quality of life. They also
know though that if the reality is clear that this is no longer my path in
life, I will accept the inevitable and live out this precious life with as much
dignity as possible without one regret.
There is one final thought that I feel a great need to
share, as it is such a rare occurrence in the workplace today. Anyone that
knows me, knows that I have dedicated my professional life to my patients. I
have found a specialty that is the most fulfilling day to day experience of my
life. I am proud to say that in my professional specialty career, I have been
blessed to work with Physicians and Nurses and Medical Secretary Specialist of
the highest caliber. Each one teaching me lessons only the lucky are fortunate
enough to learn.
Since the Beast’s recurrence in February, my heart has been
very heavy with the knowledge that my repeated absence from the office has put
a strain on everyone. After recovering enough with this crisis, I spoke to
several of our Physicians and our Practice Administrator to suggest my
resignation. I did not feel that I was adequately healthy enough to continue to
successful aid my patients in their quest for good health or to aid my
Physicians in their quest to provide the highest quality of healthcare
available. This offer of resignation was vehemently denied. I sighed a breath
of thanks and vowed that I would do the best I could to get back to the office
as soon as possible. This is an easy decision, because what I do is not my job,
what I do is intricately woven into the fabric of who I am. If I am not a
Nurse, part of me is already gone.
So, I now have a new short -term goal. Discussing this with
my healthcare team, we have decided that a return to work by November 7th
might be attainable. At this time I might have to wear a mask and gloves to
protect myself from germs and infections because of my work with patients that
are ill. This is not such a bad thing. One of the medications that I am taking
to try to reverse the liver failure is a very high dose of prednisone everyday.
I have now been taking this for 3 weeks and the side effects are quite
noticeable. I am now taking on the appearance of a jet puffed marshmallow. Not
a good look. I know that this is reversible once I can get off of the drug but
this vast change in body image is yet another painful reminder of my daily battle against a formidable foe. On the lighter
side, I am reminded by my middle child, seeing that Halloween is right around
the corner, I might use this to my advantage. You see, there is always a silver
lining.
I continue to share these experiences with one goal in mind,
to teach. My battle with this ugly Beast could have been prevented with regular
Dermatology exams. Every Caucasian needs to be checked yearly. But the Beast is
not prejudice. It attacks sisters and brothers of all colors and ethnicities.
Please, if you do nothing else, make an appointment for a full body exam of
your skin. It is NEVER “just skin cancer”. MELANOMA KILLS.
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