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.
