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 4^th infusion.

I could see my goal in site. The 4^th 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 4^th 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 4^th 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.

So, planning and preparation and packing complete, we departed for our trip to the majestic Canadian coastline. All this started off well, albeit subdued. I felt the need to sit my friend and her partner down to explain to them that from time to time my new reality would have to take precedent over my actions and I might have to rest more often than normal. I explained to them that I would be offended if they altered their vacation to keep me company and in fact would not allow that to happen. The first 2 days were lovely. Although the weather was brisk and it was windy with gusting from 20 to 40 knots, the ocean was gorgeous.

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 7^th 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.