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.

How do you teach those who heal others

How do I get through to the young doctors.  Is it even my place to try to get through to them? Someone must at least attempt to.

These questions and dilemmas arose recently. They arose because of suffering that even one who is well versed in descriptive language would be hard pressed to verbalize.

It all began on a gorgeous winter morning. It happened to be my favorite day. I’ve always loved Valentine’s Day, and the day began with beautiful and unseasonably warm weather. It held promise for a wonderful and restful Sunday.

I went upstairs to my bedroom to dress and prepare myself for the day and to get ready to make my bacon-loving husband his routine Sunday morning breakfast of bacon and eggs. After removing my pj’s I realized that I hadn’t checked my original surgical sites in a little over a month. Checking the right thigh’s surgical incision of 2013 for stage 3 malignant melanoma and the sentinel lymph node biopsy site in the right groin had become a monthly routine. Both my surgical oncologist Dr. Steven Katz and my medical oncologist Dr. Vincent Armenio had instructed me of the importance of checking these 2 sites by gently passing my fingers over the incisional scar. They strongly impressed upon me the need to perform this inspection, as these would be the first areas of concern for recurrence if the melanoma were to return. It would return to the same site first in all probability.

So, without delay, I gently passed my hand over the scar that runs along the right lower thigh. This is a scar that is approximately 8 inches long. It has long since healed and it felt flat and smooth like it always has.  I then moved to the area of the sentinel lymph node biopsy in the right groin. A sentinel lymph node biopsy is a procedure performed at the time of the original wide excision of the melanoma to determine whether there has been metastasis to the lymph nodes. A radioactive dye is injected IV. It contains special biomarkers that can be seen under fluoroscopy. These sentinel nodes are then removed and sent to pathology. If melanoma is identified in the lymph nodes, it makes it a very ugly and complex journey ahead. At the time of my original surgery the sentinel nodes were clear of melanoma, which was not only a great relief but very encouraging.  On this beautiful winter morning, my favorite day of the year, my life took another sharp detour.  There was a hard lump in the groin the size and shape of a large peanut M&M.

I thought my heart would stop beating. I couldn’t breathe and came close to passing out. I knew clearly what this meant.  I knew that my cancer had returned, and in the worst spot of all.  I could hear Dr. Katz’s voice repeating his relief when the original sentinel node biopsy was negative. His words to me exactly were “I am so relieved that the pathology was negative. It would have been an extremely ugly complication and resulting surgery if it had been positive”!  So needless to say, my fright was indescribable. Struggling, I slowly regained control of myself after several long minutes. During the time that I was dressing and getting ready for the day my mind was racing with what I needed to do because of this discovery. I quickly decided to keep this news from my beloved husband for the time being.  He has been through so much in the last 3 years during my journey with the evil beast melanoma. I received my diagnosis only 5 short months after we had married. We found each other later in life and both were widows, so to know that I was causing him so much worry was almost too much for me to bear. In all honesty, he has been my sunshine through it all. He faces this with a smile and with a “what can we do next to beat it” attitude.  He has been my companion, my nurse, my caregiver and my rock. He is truly a blessing. To make things a little worse, the next day was a national holiday and I knew that my surgeon’s office would be closed and I would be delayed in initiating the necessary appointments. This was the longest 2 days of my life.

I am a pretty controlled person, not prone to hysterical outbursts, so when I finally spoke to my surgeon’s nurse Doreen on Tuesday morning, she knew something was very wrong. I was having great difficulty relating to her what I had discovered because of my fright. When finally I was able to tell her what I had found she was amazing. That day she arranged an ultra sound at Roger Williams Medical Center.  The hospital is very close to my office so I left mid-day to start the extensive medical journey that would be a large part of my time and schedule and thought process for the next 10 days. After registering at the intake center, I was taken to the Xray department. The tech was gracious and understanding and did her best to make me comfortable. During this test there is a gel that is applied to the skin and a special wand is pressed to the area in question, in my case, the right groin. This then transmits a picture of the underlying tissue and problem areas, if any, to a tv monitor. Because I have been a frequent patient in that hospital and in all the diagnostic departments for the last 3 years, I know many of the personnel. The tech was quiet and pensive and when the test was completed she wished me luck. In all of my previous studies, she would give me a verbal report of the test results, but not this time. I knew why and respected her professionalism.

Doreen also arranged for an FNA (fine needle aspirate) to be performed in the office the next day. This is a procedure where a large gauge needle is introduced into the lymph node 8 or 9 times and cells are harvested. These cells are then sent to pathology for identification. Dr. Katz was out of town for the week so his surgical oncology resident Dr. Reha performed the procedure.  He was compassionate and proficient in the procedure and tried to ease my fears. After much deliberation on my drive home, I now felt that it was time to tell my husband that again our fight against the evil beast would begin anew. As always he was a rock and said we would fight as hard as we needed to, to ensure that we would again conquer the evil beast.

Over the next week additional diagnostic tests began which included CT scans with contrast of the pelvis, abdomen, chest and an MRI of the brain. I truly thought that I would glow in the dark after all these tests were completed.  It almost felt as though I were being poisoned with all he toxic contrast material being injected intravenously to perform the tests.

After Dr. Katz returned it was time to receive the results of all the testing that had been performed.  He was genuinely sad to give me the bad news that my cancer, the evil beast malignant melanoma, was now metastatic and had spread to the lymph nodes.  His words of 3 years prior, “an extremely ugly complication and resulting surgery” haunted me. He had also told me after our first meeting that we would be “friends for life”. I now understood what he meant.  The human psyche is an amazing thing. Although, being a member of the medical world, I knew the seriousness and the pending implications of the words he had just spoken to me, but the gravity of the situation didn’t sink in for a few days. This is a blessing as it allows one to attend to the details of multiple appointments and clearing work schedules and finding adequate coverage for my patients.

One of his dermatology oncology residents was with us at the time of this dire news and explained what could happen during surgery, but that no one confidently knew before they opened me how extensive the procedure would be.  He also explained that I would need chemotherapy again after fully healing from the surgery.  Radiation therapy was discussed also. Having had chemotherapy already after the first surgery and not doing well with the side effects, this was the one part of the whole discussion of my care and treatment that I dreaded. Being a healthcare provider myself, I knew to a certain extent what I would be facing, or so I thought. So quickly, a surgical date of the next Monday was planned and booked as well as pre-admission testing. All of these appointments, too numerous to count, were attended while still working full time in my own very busy medical practice. I am a Nurse Specialist in the field of Ears, Nose and Throat, Head and Neck medicine.

One would think that having dealt with this ugly beast called melanoma for 3 years that you would be well aware of not only the medical possibilities, but be mindful of the “what ifs” life can deal to you. “What if” I can’t work again. “What if” there are complications to the surgery.  “What if “ I die this time.  Two weeks into this very extensive and physically and mentally draining diagnostic process, I experienced an epiphany, “oh my God, I have not prepared for the possibility of a bad outcome”. You might assume that after the first diagnosis of a very aggressive cancer, you would ensure that all legal avenues had been traveled to prepare the family for the inevitable.  This couldn’t be further from the truth in my case. Upon reflection, I could see that the initial diagnosis did not hit home as real to me. I was so fortunate, as I had absolutely no pain associated with the first 2 surgeries, which I found to be medically odd. Exactly one week after the first surgeries, I was back in my office running up and down the halls, in and out of exam rooms and assisting doctors like I hadn’t had the dire diagnosis and extensive surgery I had received.  Although chemotherapy after the surgery was absolutely the most challenging time of all, after 6 weeks I was again in the office full time. Since that time, there were 12 more surgeries until this new diagnosis and I had sailed through each and every one of them without a hesitation in my work schedule or my social life and without ever taking pain medication.

Somehow, this recurrence of the aggressive cancer, slapped me right in the face. It was like I was seeing this beast for the very first time for the nasty and potentially fatal disease it was trying to become in me.  Having only a few more days until the surgery would take place, I quickly updated all the beneficiary information on retirement plans, 401k and insurance policies. A will was drawn up as well as a durable power of attorney for all medical issues and all my credit cards were paid in full. I didn’t want to leave anything behind for my family to deal with if my outcome wasn’t good. For the first time, this disease was real to me and I knew I would be fighting for my life and just as importantly for time.

The weekend before my surgery was very busy. The time was filled with chores that needed to be completed. Preparing the house to be without my attention for a couple of weeks kept me busy on Saturday. On Sunday, the day was spent cooking meals for my beloved husband so that in my absence, he would have good food to eat and not rely on junk food like McDonalds. I was told that my hospital stay would be at least 2 days but knew that my condition would prevent me from cooking.  A week’s worth of some of his favorite foods were prepared for him so that when he returned home from the hospital in the evening, he could rest and have a nice meal. These duties provided a much- needed mental diversion for what would happen the next day.

Monday was the surgical day. I was to report to the hospital at 9am for a 10:30 surgical time. Being a stickler about being prompt, we arrived at the hospital at 8:30am just to be told that the surgical time had been changed to 11:30 and we would have to wait to be brought into the pre-op arena for another hour. Waiting has never been hard for me. My religious background is Roman Catholic and I tend to say my Rosary during times of duress as well as while I am driving or waiting. This was a perfect opportunity to say my prayers, or I should say, say additional prayers.  However, they called me in early as a patient that was to have surgery before me did not show up and they would take me in his place. So at 10am I proceeded to the pre-op arena. My husband and I said our “goodbyes and see you laters” and I was led to my bed by the intake nurse. An IV was started and a parade of different physicians and medical students and anesthesiologists made their way to my bed, all the while, I am still saying my prayers. By 1pm my surgeon came in to visit and to tell me that he apologized for the delay but that “I was the main attraction” that day and he was waiting to get the biggest OR suite to accommodate the students and residents that wished to observe (I should have known then that I was in trouble!). I assured him that I wasn’t going anywhere and the start time didn’t matter to me. He left and my praying continued. For me, saying the rosary is not only praying, it has always had a calming effect on me, so waiting until the surgeon and the suite were ready was not hard for me. What I didn’t realize at the time was that my family was already calling the hospital to check on me, and what hospital room I had been admitted to as they still thought that my surgery start time was 10:30 am. Surgery began at 3pm.

The first thing I remember after surgery is hearing someone, who turned out to be my recovery room nurse, say to me, “you have a lot of people calling here worried about you”. It was 8pm. The surgery had taken longer than expected. My husband tells me that my Surgeon spoke to me in the recovery room but I have no memory of that. The next lucid memory I have is being wheeled out of an elevator and hearing “Mommy, Mommy, my Mommy is here”. At this point I realized that I wasn’t dead. The voice I heard was my middle child who, by the way, is 43 years old. When he is kidding with me he calls me Mommy. But his voice revealed great relief just to be able to see that I was intact in one piece after a long day of waiting and worrying.  During the day, because of the new HIPPA privacy laws, my three children were unable to get any information from the hospital. And because of the late start and the long surgery, the hospital was closed to visitors and they were not allowed to enter. But my middle child being very charismatic with a personality larger than life itself was able to convince an emergency room security guard to escort him to the floor that I was being admitted to.  This began a 4- day hospital stay. The Nursing staff was superior and attentive. The private room was beautiful and comfortable, but trouble began almost immediately.

After my husband and son left the hospital for the evening my blood pressure started to drop. It kept dropping all night and remained at 62/40 all during the night. The night Nurse was wonderful and didn’t leave me but for short periods. They started to push IV fluids thinking that because the surgery took place so late in the day that I had been fasting way too long and was suffering the side effects of that. They pushed the IV fluids to such a degree that my hands (the only parts of my body I could easily see) were swollen so large that I couldn’t close my hand or bend my fingers. They actually looked like the Pillsbury dough boy’s hands, round and puffy. I spent a very fitful first night. My pain medication included Vicodin by mouth and Morphine IV. This was my first experience with Morphine and discovered very quickly that I wasn’t tolerating it nor was it effective in relieving the pain.  By early morning my blood pressure had risen to 98/50, which was a relief.

The next morning the medical parade began. Because of the extensive type of surgery that it was, there were quite a few residents and students assigned to my case for educational purposes, from PA’s to surgical residents and oncology residents. These young and eager residents seemed to enter the room in waves of white coats, 4 and 5 at a time. I was aware enough to realize that when they brought down the sheets to examine the surgical site that they had puzzled and concerned looks on their faces. I was not able to see what was concerning to them. I knew that I was in terrible pain but thought that it was due to the difficulty of the surgery, that it was expected. What I didn’t know until the next day is that I had developed a compressed abdominal hematoma that had distended my abdomen to twice its normal size and had turned my lower abdomen black. The severity and the degree of pain that I was experiencing was impossible to put into words. Receiving one Vicodin and Morphine, which really did nothing but make my teeth chatter and give me tremors, was grossly inadequate. And yet, my physicians were very concerned about changing this medication. Because of the hematoma, they were afraid that a change in medication could potentially worsen an already black and distended abdomen. And evacuation of the hematoma was not an option. Harvesting the lymph nodes in the groin was a torturous process because they were situated very deep in the groin. A large amount of muscle tissue had to be removed with the nodes.  This procedure left the femoral artery unprotected. This was remedied by creating a muscle graft from the neighboring abdominal muscle to form a protective layer over the bare artery. Dr. Katz could not chance disturbing this graft as it could ultimately compromising my right leg.

Just when I thought that I knew how painful this surgery could be, I realized I had no idea. For the first 2 days of admission I was confined to bed with an indwelling foley catheter. Also attached were leg pumps to prevent DVT (deep vein thrombosis). So I hadn’t attempted to get out of bed. The morning of the third day, the student PA came in to the room very early, he was always first to see me. He said, “Well, today I think we will remove the foley catheter”. My response to him was, “are you kidding me, you don’t even know if I can support my weight to walk and you are going to remove the foley…wouldn’t it make more sense to get me up first and make sure I can make it to the bathroom!”  He thought about it for a second and agreed that maybe that was the best idea. He left the room and my nurse came in the room to, yes that’s right, to remove the foley. I assume that his thought process was that if they removed the foley I would have absolutely no choice but to get up and move. This turned out to be true but what it also did was reveal the true depth of pain that I was experiencing.  One of the first things we are taught in nursing school is that to get the best results from a post-op patient you need to insure that their pain is controlled.  Medicate the patient adequately for pain before you challenge them to new activity. I guess they didn’t teach that in medical school.  Did I mention previously that not only did I have an abdomen distended twice it’s size with a blood clot but the incisional line was 20 inches in length. It extended from mid-thigh to just below my belly button.  There were also 2 JP (Jackson-Pratt) drains to help assist with excess drainage.

First of all, I must explain that I am one tough cookie. From the beginning of this ugly melanoma journey of three years duration and 13 previous surgeries later, I had never taken pain medicine stronger than Tylenol.  The first 2 surgeries were extensive but even then, never even took Tylenol. I do not easily give in to adversity whether it is physical or emotional. To experience this severity of pain that even the strongest of medication wasn’t touching was a new and disturbing twist in this already convoluted melanoma journey.

My family arrived on the third day post-op to find me almost unrecognizable with the degree of pain that I was in. My face was distorted and unrecognizable. At this point, my doctors had no choice but to change my pain medicine to IV Toradol and increased the Vicodin to 2 instead of one.  This change gave me my first relief in 3 days. I was able to walk to the bathroom after receiving assistance with getting out of bed from a nurse with the aid of a walker. The fact that I needed the assistance of a walker was extremely discouraging to me. I have always associated walkers with disability and old age. At this point I was feeling both.

On the morning of day 4 the usual parade of young white coats made their entrances. The routine was well known now. The sheets would be pulled down, my hospital gown would be pulled up and I would be left bare and unattractive for all to inspect. It is a very humiliating and a humbling experience. The last to arrive that day was my Dr. Katz. He proceeded to tell me that he felt my discharge was in order but that he felt that I needed more care and was discharging me to a rehabilitation hospital. For the first time in the 4 days since surgery, he saw the old me, the feisty redhead that usually didn’t take this kind of news without a fight.  My words to him exactly were, “hell no you are not”. Well, that stopped him in his tracks. I totally understand that he was afraid for my safety and that I wasn’t ready to navigate my 2 story colonial home. I explained to him that I have a very attentive family and an army of support to help until I could fend for myself. He agreed, with reservation, to allow me to go home but I would have to spend the rest of the day in PT being taught to walk with a cane and walker and learn how to climb stairs with a cane.  If the Physical Therapist approved it, I would go home. No one has ever worked harder to achieve a goal as I did that day. And of course, like anything else that I put my mind to, I did well in PT and was discharged to go home that night.

As I sat in a wheelchair at the nurse’s station waiting for hospital transport to bring me out to my waiting husband and away from 4 days of suffering, I observed one of the oncology residents at the far desk. He was a very young, tall, athletic build young man. He had just written my prescriptions for me to take home. He had written for Vicodin, one pill every 6 hours for pain. As the nurse gave this to me she also relayed his message that he wanted me to get off of the pain medicine as soon as possible. So as I sat in the wheelchair, anxious to be home but afraid all at the same time and in quite a bit of pain from my marathon day, I realized that this young, healthy man really, really didn’t know what pain was. Oh, I’m sure in his short life he has had an occasional brush with minor injury and illness, but he truly didn’t understand the depth of pain a cancer patient will experience, nor would he ever understand it. Medical students are taught everything they need to practice medicine, but they are not taught empathy for suffering. That is a trait you either have or you don’t. I am very fortunate to have a surgical oncologist, Dr. Katz and a medical oncologist, Dr. Armenio, who are both blessed with great empathy for their patients.

I was so happy to be home, to be with my husband and with my family that kept dropping in to make sure we were in need of nothing. I couldn’t navigate the steep stairs to our bedroom on the first night so I got comfortable on the recliner and spent a peaceful and serene first night back in my beloved home. I followed the doctor’s orders to try to get off of the medication as soon as I could, by taking only one pill (Vicodin) in the morning and one pill at bedtime while taking Tylenol during the day. This was extremely difficult because of the severity of pain that I was in. I actually thought that maybe I was being a baby about it and to “man” up and take it.

The days were long and full of visits from my visiting nurse, visiting PT and friends and family. I tried to move as little as possible to minimize the excruciating, never-ending pain that I was experiencing. Finally my first post-op office visit was at hand. It was now 10 days after surgery. I was distraught because I couldn’t imagine how I was going to have the strength to do all that needed to be done to not only get ready for the visit but to physically get in the car and navigate while at the doctor’s office. Of course my husband was right by my side but my pain was extreme and my movements limited. I hadn’t realized how very bad I looked until I arrived at the cancer center for my appointment. The medical receptionist, who I knew well from my 3 years of frequent visits didn’t recognize me. Dr. Katz’s nurse was visibly upset at the sight of me. When she asked, “my God, what is wrong”, I finally found someone who would listen to me and understand the degree of pain that I was experiencing. Doreen is a wonderful nurse and immediately relayed my condition to Dr. Katz and his assistant Dr. Reha. They both apologized for the degree of my pain and asked why I hadn’t called to report that the medication prescribed for me by the young resident wasn’t adequate to control the pain. I shared with them that I had never experienced or could even imagine this severity of pain and thought that maybe I was babying myself. They assured me that my pain was real and they changed my pain medication to 2 Percocet every 6 hours and Mobic one pill a day.  My recuperation progressed quickly from that day forward. If you will remember, as I’ve stated earlier, one of the first lessons a new student nurse learns is to control a patient’s pain before you challenge them to move and begin recovery. I am a perfect example of that theory and maybe medical schools should teach the same lesson plan. I understand the concern for the use of Opioids, however, fresh post-operative patients need to be evaluated according to the severity and extent of the surgical procedure and their past history of opioid use.

It was approximately at this same time that I started to experience drainage from the incisional site in the area of the groin. As I’ve said, there were 2 drains in the surgical area to help minimize swelling and fluid retention. But this is not where the drainage was coming from. I told the visiting nurse about this and she came to my home to examine the area and to make recommendations. Because of the size of my distorted abdomen and the difficult area the drainage was coming from, I couldn’t identify what was causing it and where it was coming from. Technology today can be so beneficial. My nurse was able to identify the area of concern, and took a picture of the area with my smart phone. It was obvious that three of the surgical staples had torn away revealing an eraser head sized opening through which the drainage was finding a way out.  Mystery solved, but the amount of drainage just increased hour by hour and day to day. I was unprepared for this occurrence and needed to get creative in how to react to this amount of drainage. I wasn’t concerned so much with the amount of the drainage at this point. It is also a theory taught in nursing school that drainage, no matter how heavy a flow, is better out of the body then in the body. So I put my thinking cap on. I was changing pajamas 5 to 6 times a day because the drainage was unstoppable. So without medical supplies on hand I took 3 extra absorbent Bounty paper towel, put them together, folded them in 4’s and placed this over the site of the drainage. I then took a Ziploc bag and placed that directly over the folded paper towel in the attempt at keeping my clothing dry and stain free. All of these protective shields were held in place by my undies.  To be honest, it worked pretty well and thank God my husband had just bought a case of paper towels. In the first 4 days I had gone through 6 rolls of paper towels. I actually collected just 2 hours worth of drainage soaked towels to show one of my fellow nurses that came to visit. I knew that unless she saw it with her own eyes that she wouldn’t believe the amount.

By post-op day 15, the amount and consistency of the drainage was troubling. My visiting nurse was concerned with the way I looked and the amount of blood in the drainage and encouraged me to go to the hospital. My husband agreed because he was afraid that I would worsen during the night. So off to Roger Williams Hospital ER we went. I was triaged quickly, an IV started with blood tests drawn and Xrays done of the chest and abdomen. My surgeons were in the OR that day so they were able to examine me in the ER. It turns out that what was happening was a physiological event. When a blood clot, the size of which I had in the abdomen, contacted healthy internal organs and tissue, there was a chemical change in the clot from solid to semi-liquid, and this liquid had found a way out. Again better out than in.  So we left the ER 5 hours late reassured that the drainage was not dangerous and I set my mind to trying to manage it instead of worry about it. Two weeks after this ER visit and right before I would attempt to go back to work a few hours a day, I experience a large amount of clots coming from the drainage opening in the groin. I had wiped away close to 6 or 7 large clots when in the next large clot I saw a very long suture attached to the end of the clot. This little instigator was probably the cause of the hematoma. Apparently a suture let go right after surgery, which in retrospect caused the hypotension the night of surgery and the large hematoma discovered the next day. I continue to be amazed at the recuperative powers of the human body.

It was also at this point that just like in grieving the death and loss of a loved one, a cancer patient begins to grieve for the life they once had before the diagnosis. Most often, when I write, it is because I am strongly inspired to do so. It is like if I don’t put this inspiration into words, it might just explode in my head. So I set out to write a “dear John” letter to melanoma. It went like this:

Dear Melanoma, you UGLY EVIL BEAST,

When we first met 2 ½ years ago, you tried to rob me. You tried to rob me of many things. First and foremost you tried to rob me of my health. You tried to rob me of a future. You tried to rob me of my peace of mind. You tried to rob me of my happy life. You gave it your best effort but despite the disfiguring surgeries, 13 in all, despite the toxic poison that was pumped into my body everyday to try to fight you and despite the everyday overwhelming worry that you would come back, I didn’t let you win. Despite the constant invasive testing and toxic contrast mediums that were pumped into my body to monitor that you were gone, you didn’t win.

After 2 ½ years I was finally learning to live in peace and to look forward to a full life. My New Years resolution was to live the best that I could without thinking that you were right around the corner to halt me in my tracks. I vowed to concentrate on living instead of being in constant fear of your reappearance.

And then, on Valentine’s morning, you UGLY EVIL BEAST, you decided to rob me again. This time, because I had spit in your face on our first meeting you decided to up the ante. The evil that I had feared for 2 ½ years was realized. You left a sign to scare me and to change my life yet again. I discovered a very large lymph node in the area of the original sentinel node biopsy site. To be totally honest, your gift left me faint. I knew with all my heart and soul what you were trying to do. This time, you were trying to strip me of me quality of my life, the functionality of my body and my psychological wellbeing. 

This began an intensive 2 weeks of extremely invasive diagnostic tests to see how serious you were this time with the invasion of my body. From ultra sounds, to FNAs (fine needle aspirates), 4 CT scans all with contrast and an MRI of the brain, my team of Doctors was certain of your EVIL intentions. You had taken up residency in my lymph nodes in the right leg. This was a blow too strong to endure. Our only option to fight you, you UGLY EVIL BEAST, was to remove as many lymph nodes in the right leg and abdomen as possible. A surgical date was set. At the same time, I experienced an awakening. It suddenly dawned on me that YOU UGLY EVIL BEAST, might just win this time and there was much that I needed to do to ready myself, my household and my family, just in case I didn’t survive. So the week before surgery was busy with getting my house ready to be without my attention for awhile, to cooking meals for my beloved husband while I wouldn’t be able to for the time of my recovery to the nasty distasteful task of seeing to the legalities in case of my demise. A will was drawn up, as well as a medical proxy.

One of the most difficult discussions was reserved for my precious husband and children and twin sister and brother. I waited until all of the tests were completed and I knew how I would have to fight you, you UGLY EVIL BEAST. It made my heart so heavy to know that they would again worry about loss and that loss would be my fault.

So the surgery to rip you from my body again was March 7^th. This was by far, the most devastating surgical procedure to date. The incision line extends from mid thigh to my waistline. There are drains to minimize swelling. I never thought that I would be at a loss for descriptive adjectives, but indeed I am. There are no words known to man to describe the depth and severity of the pain you caused this time, you UGLY EVIL BEAST. 17 lymph nodes were removed and 2 were metastatic, which meant you were serious about this new assault. 

As I write this, it has been 16 days since my Surgeons removed you again from my body. But even though you have been removed you have raised the ante. Because there is no way to know if or where your micro-metastasis are located, toxic treatment will begin anew after recovery from this most recent devastating assault. And again this new treatment will rob me of my health and quality of life. All of this to prove to you that you are the UGLY EVIL BEAST THAT YOU ARE. 

It is my promise to my husband and children and family that I will fight you, you UGLY EVIL BEAST until my last breath…and this time I will not waste a moment worrying whether you will be back. I will be readying myself for the next battle.

Writing this letter was very therapeutic. These thoughts and feelings were screaming to be put on paper. After unburdening myself of these thoughts and feelings, my recuperation went into high gear. I was again performing daily duties such as light housework, and cooking and even shopping for a few groceries. During a visit with my Dr. Katz, who I had been seeing weekly because of the complications, I asked him if I could go back to work. He, knowing me as well as he did, decided that he would leave that decision to me as he trusted my judgment on the matter.  So when I attended my next visit with him and he asked if I had decided to go back to work, I told him I had been back to work for a week already and working full time. He was amazed at my progress of just one month. I told him it was due to his God given talents, the power of prayer and a positive outlook. He added one more fact, that because failure was not an option for me, that recuperation was complete.

As I write this, I am 8 weeks post-op. I have been back to work for a month full time. It has been challenging to say the least but wonderfully healing and therapeutic all at the same time. There are many more challenges ahead of me because of this diagnosis and surgery. I must start chemotherapy again shortly. Of all that I have been through I dread this the most. It is the unknown that has always scared me motionless. Hopefully after I have my first treatment under my belt, I won’t be so fearful.

I will also live the rest of my life with lymphedema of the right leg and the abdomen. This is caused by the removal of the lymph nodes, which are responsible for the control and elimination of excess lymph fluid. I now have to wear compression stockings on the right leg and will soon receive a compression pump system which I can use at home that will help control and eliminate the excess fluid and avoid secondary problems of pressure ulcers.

But it was a statement by one of the Surgeons that I work with everyday that made one of the greatest impacts on me and motivated me to sit down to write this narrative. When I tried to describe the pain that the surgery had caused and I lacked the descriptive adjectives to adequately do that, he said something that initiated an awareness in me. He said “I have seen many of my cancer patients in severe pain, but I truly don’t know what they are going through because I have never experienced severe pain myself.”  My mind immediately went back to sitting in the wheel chair at the nurse’s station waiting to be discharged from the hospital. The nurse had just told me that the doctor instructed me to get off of the pain medication as soon as I possibly could. I felt once again how angry I was at that statement after looking at him and seeing how strong and healthy he was, and just now being able to understand that anger. I was angry because I knew he had no ability to understand what my 3-year journey had been like. Despite his years of education and intensive training, no one can truly understand the changes of lifestyle, the degree and severity of pain and the mental anguish that a diagnosis of metastatic cancer can cause not only the patient but, that patient’s entire family and support system of friends. And this understanding of my own personal anger’s origin brought about forgiveness. And this forgiveness brought about the need to want to teach those that heal, the true art of compassionate healing.  Healing pain in the body, in the mind and in the soul are equally important. This is a lesson that must be taught to even the most seasoned cancer specialists.