A visit in Hell

It has been almost a year since this convoluted journey of metastatic melanoma took a side trip through hell itself.  My last posting after a body image, life altering, devastating surgery to remove all the lymph nodes of my right leg, groin, pelvis and abdomen pales at the further health crisis and challenges that were to lay ahead. It is truly a blessing that these facts are not known. Although, that said, my decision to continue treatment with a newly FDA fast tracked adjuvant therapy might have been quite different had I known how my body would react. As I contemplate the year and strive to remember every detail in the effort to teach and share experiences, it is still unknown whether any of the treatments or resulting medical, physical and emotional holocaust has done any good in buying me time or preventing further progression of this deadly cancer.

The devastating lymphadenectomy took place March 7, 2016. Recovery was fraught with complications from a compressed abdominal hematoma that extended the girth of the abdomen causing it to double in size, to open weeping wounds that would eventually take months to heal. The pain level was intense but once adequately controlled, lessened quickly. And as in the past, my main focus was to return to as normal a life as possible. For me, that meant returning to work quickly.

Four weeks later, to the astonishment of my surgeons and oncologist, I was again working full time. Although true normalcy had not returned as far as energy level and what I was able to accomplish in a day but I was back at work.

Slowly, my strength and ability to partake in life returned to what I considered an acceptable level. My husband and I were able to occasionally go out on our date night, which always was a joy. This grace period of partial normalcy was soon to end.

After my wounds had healed, we were now ready to discuss the options available at hand to try to prevent the beast from spreading further and becoming stage 4. In November of 2015, a new therapy called Immunotherapy, and a drug named Yervoy (Ipilimumab) was fast tracked by the FDA for adjuvant therapy for metastatic melanoma. Adjuvant therapy is defined as a therapy initiated to hopefully prevent progression of stage 3 metastatic diseases from becoming stage 4 disease. Although it does show promise in this capacity, because of the short amount of time in use, hard clinical data was not voluminous.

A patient’s ability to tolerate this drug is truly a crapshoot. In the spectrum of experience, some patients are able to tolerate it well and to complete the 3-year regimen that is needed to insure an adequate and hopefully positive treatment outcome, while other patients have died after just one dose. This was a frightening fact in my personal research. And although the gravity of my decision should have been starkly black and white, the concept of dire consequences didn’t even enter my thought process. The only facts that I could recall when the decision was made to move forward with this new therapy was something my doctors had said, “this may give you time!” So a date was set to begin these treatments. To achieve the maximum benefit from the adjuvant therapy however, the dose is raised to 3½ times the treatment dose, in essence a toxic and dangerous prospect. The treatment dose of Yervoy is 3mg/kg of body weight; the adjuvant therapy dose is 10mg/kg of body weight, increasing the possibility and likelihood of toxic side effects. Side effects are categorized as grades 0-4 depending on the severity, 4 being life threatening with the highest potential for life long disability.

As in the past, my first thought always was of my work. As is true since my Nursing profession began, my work is not just what I do, it is an integral part of who I am. This feeling of intense responsibility not only to my patients but also to the wonderful team of physicians that I work with has always been the first thought when recovery time was contemplated. My first words to my surgeon, Dr. Steven Katz was always, “when can I return to work?”  Because failure to return quickly was not acceptable to me, it was thought that this was my fuel to stay positive and recover with amazing quickness. This premise and theory would be put to the ultimate test in the months to come.

The time for the first infusion was drawing near and again; the planning and timing of these infusions were booked around the least impact to the practice and to my patients. It just so happened that each of the first 4 infusions, to be administered every 3 weeks fell on a holiday weekend, allowing me an extra day off before having to return to work. So only one day was missed in my regular work schedule.

I truly missed the entire summer. Every holiday was spent in bed recuperating from the latest infusion. Although well enough to go to work, there was a constant feeling of severe ill health that is so wide ranging that to try to enumerate each and every symptom would have been impossible. During this time also, other pitfalls presented themselves. Developing shingles after the second infusion of Yervoy seemed a particularly nasty slap in the face. Not only ill from the infusion but now the added illness and pain caused by this infection was really too much to bear. This occurred 2 weeks before we were to leave on our much anticipated and needed yearly vacation on Martha’s Vineyard. This is the one vacation that has always been not only enjoyed but restorative to mind, body and spirit. This year it was none of the above. Illness, physical weakness and mental anguish surrounded me like a veil I couldn’t escape from. Upon our return home, there were 2 more infusions at three-week intervals. It was my goal to complete the first 4 infusions. It is stated in the clinical trials that the most important of the infusions are the initial loading doses of 4 infusions every 3 weeks. The therapy then continues for 3 years but infusions are administered every 12 weeks. It was a personal victory for me to have achieved these first 4 doses and to know that I would only have to return every 12 weeks was encouraging. I thought that I just might be able to complete this therapy with the greatest hope of buying me a gift that money can’t buy, TIME.

The 4^th infusion was given on the Friday of Labor Day. Again, because of the holiday weekend there was an extra day to recuperate before returning to work. As it happens we had another vacation that had been planned and paid for 18 months prior to learning of the recurrence of my disease. We were to travel with my oldest friend and her companion on a cruise of the Canadian coastline. Although we have been best friends for over 40 years, we had never vacationed together and were both looking forward to this with great anticipation. So, although not quite myself, I started the preparation and planning of the trip. The week prior to leaving I visited my Oncologist, Dr. Vincent Armenio and my Internist, Dr. Vanessa Greenier, both giving me the green light to embark on this next adventure. I seemed healthy and my weekly blood work was mostly within normal limits. We boarded the ship docked in Boston Harbor on the last Sunday in September, looking forward to seeing the lovely Canadian coastline and enjoying the fun on board ship. Little did we know that this long awaited and anticipated journey would take an almost deadly turn.

Sunday and Monday were pleasant days on board ship. We were at sea and the sky was cool and crisp with the smells of autumn. On Tuesday the weather turned inclement and the wind picked up considerably. I am a fragile sea-goer and easily prone to violent seasickness. For this reason I embark on cruises with a great respect for the use of anti-emetics which I had with me. By Tuesday evening, feeling particularly unwell and attributing this to the rather raucous movement of the ship, I excused myself from our dinner plans and was escorted back to my room arm in arm with my best friend and protector. Once deposited in my room I quickly found the safety and warmth of my bed soothing and feel fast asleep. That was day 2 of an 8-day cruise and the last day that I would leave my room and the safety of my bed. That 2^nd day at breakfast, was the last food I ate for the remaining 6 days of the cruise. Although knowing somewhere in my half conscious state that I must maintain adequate hydration, the quest to drink water was always paramount in my thoughts. As the days wore on, I became more ill by the hour. In my recollections of this time as I write this narrative, I now realize that I was close to a semi conscious state. I would become aware of my surroundings and people in the surroundings in small snippets of time. I can vividly remember telling my dear husband that I was going to die on the ship, truly believing this to be fact and feeling the depth of illness one must feel when near death. One evening I awoke to my best friend sitting on the bed next to me telling me to hold on and that we would be home soon. I was so sorry to be putting my husband and my dearest friend through so much. To have to watch me decline so quickly was truly horrific.

Finally, our ship entered Boston harbor early morning on the first Sunday in October. For anyone who has taken a cruise and know the difficulty of quickly disembarking this vessel can relate to our immediate need at hand. Both my husband and my friend and her companion took off in different directions in search of crewmembers that could assist and expedite our departure. Because this was an international cruise, the added delay in coming through customs was a great concern to us all, although I was pretty much unaware of my circumstances and surroundings, I knew how I felt and also knew that I couldn’t hang on in a conscious state for too much longer.

With everyone’s efforts, crew members were commandeered along with a wheel chair and the escort of my best friend’s companion Ed acting as ramming rod to get me through and around the lines of waiting people in front of us, we left the ship in a mere 15 minutes. The crewmembers and the custom workers recognized the gravity of our situation and allowed us all to pass through without inspection. Additional crewmembers were awaiting us on the dock to expedite our luggage and assist in getting me into my husbands waiting car. The trip from Boston harbor to Roger Williams Medical Center took my husband 50 minutes to achieve. His thoughts were that if police detained us, he would ask for their assistance in getting me to my medical destination. I reclined in the front seat with my friend hovering over me from the back seat as best she could, always speaking to me calmly and clearly to hold on and that we were almost home.

The relief of arriving at my medical home away from home became a security blanket that wrapped me in the knowledge that I was safely in the hands of people I trusted with my life. Although I remember nothing of the ER treatment center and the testing required, I do remember the relief of knowing that I could relax and let those that I trusted without doubt, to take over the task of helping me through this latest insult. My first memories of this hospital stay began on day 3. I awoke to 5 physicians surrounding my bed. One of the team had stated that I was lucky to have the A team with me that day. Although I knew where I was and that I was acutely ill, I truly didn’t understand the gravity of the situation. I felt like death must feel like itself but didn’t have the strength or the conscious state to fathom the details that this “A team” was trying to explain.

I was told that my liver had failed and that the fact that I left the ship even in a semi conscious state was indeed amazing. Liver failure to this degree rarely leaves the patient conscious. It is indeed a testament to my thick headedness as I’ve been told so many times by my physicians and that failure and defeat is not an option.

It was at that visit that I was told that the new chemotherapy must be discontinued and that it would no longer be an available option for me in any form. I was aware enough to realize the gravity of these words and told the physicians that we needed to have a frank discussion regarding my future medical decisions. I shared with them the degree of illness and disability I was experiencing and that if this was the best that I could hope for then I would now be forced to make some very difficult decisions about the course of all future treatment. One of the team stated that although the therapy had to be discontinued, he fervently hoped that the amount of therapy that I had already received might be enough to give me some long term positive results and that we must give the liver time to see if any of it’s functions would return. As a metastatic cancer patient, I am not considered a transplant recipient patient any longer. So with a failed liver and not knowing if the functionality would return coupled with the fact that chemo must stop, my mind and heart started on a deep and dark decent into a black and scary place in my being. In my 64 years of life, I had descended into this dark black pit of despair and fear only 2 other times, once during a particularly stressful personal crisis in my younger years and once when faced with the loss of a very dear friend and mentor to gun violence. The journey out of the black hole was slow and torturous but was achieved, again, by sheer strength of will to survive and go on.  I must also tell you that I truly believe in the power of prayer and my belief in God and Jesus as my savior and a devout love of his Holy Mother Virgin Mary has seen me through some very difficult times. I also fervently believe in the aid of Guardian Angels. However, during the 2 previous times of intense inhabitance of this all encompassing black place, there came a moment of total peace, a peace that was felt to my core. On one occasion I felt this peace enter me from the top of my head and spread to wrap me in the warmth of light and tranquility, after which my slow ascent into the world of life and living began anew.  It was my fervent prayer that I would again be given the gift of this healing peace to help in my decisions that would have to be made and to accept without question the path that God had planned for me. At the date of this writing, I have sadly not received this gift of peace, which has made this part of the journey so much more difficult to traverse.

Again, my first question was when could I return to work. The physicians of the A team informed me that returning to work was not advisable seeing that I was a healthcare provider and the dangers of me getting ill were too great a risk. I acquiesced and agreed to not see patients for one month. They insisted that I wait until I was off of the high dose prednisone that I would now start taking in the hopes of preventing further system failure. Commonly the liver fails first, then followed by the adrenal cortex and the kidneys. The prednisone’s duties are to support these systems with its anti-inflammatory properties to avert further failure and damage. This was the only treatment available for the liver failure and one that would wreak havoc with my body. I did return to work full time in one month despite my liver failure. It was a decision I would soon regret for the severity of it ramifications and degree of incapacity of my whole being.

Prednisone is a miraculous drug. Despite its miraculous nature, it is a toxic and multi-system side effect devil. And the toxicity is dose and duration dependent. At lower dosages, it can be well tolerated for short periods of time. Usual doses are 10mg a day for 21 days. I was receiving 100mg per day and this dose continued for 5 weeks. At this point titration down in dose took place in increments of 10mg each time. So my next dose of 90mg per day lasted almost 4 weeks. These decreasing titrations were determined by blood tests for the liver. Each week blood work was done to monitor the liver enzymes. These system markers indicate the functionality and hopefully the recovery status of the liver. Much to Dr. Armenio’s shock my liver numbers were astronomically high. This indicated a still failed liver without evidence of improvement or recovery. One of the markers is called bilirubin. The normal range for bilirubin is 0.02 – 1.0. My Bilirubin, at it’s highest was close to 15. AST and ALT norms are 40-60, mine were 1600. These numbers and the lack of improvement necessitated a referral to a liver specialist. During this time, approximately 6 weeks, the liver markers were closely monitored but did not recover and remained dangerously high. After a particularly difficult day with work and blood tests and discussions with physicians I had finally gone to bed just to be woken by a phone call by my oncologist. It was the week before thanksgiving and he told me that he could not wait any longer to address the issue of the liver and that if we were to save any part of it I would have to be admitted to the hospital and treated with an experimental therapy that only a few in the world had received. This was devastating news. He said that he wanted me to repeat the blood work that was done that day, on the next day, and that he would call me with the details of my admission.

I went to work that next day with a very heavy heart and was distraught at the fact of having, once again, to put my work and patients at a disadvantage. I prepared my office and other nurses to be without me for an unknown period of time and spent the rest of the day in anticipation of what was to become a very bleak thanksgiving holiday. Now I’ve admitted to being deeply spiritual and believing in the power of pray. I had and still have a virtual army of people I know and those I have never met praying hard for a good outcome. The power of pray was again proven to me that day. At about 3 pm the dreaded phone call came that I had been waiting for. It was Dr. Armenio, but he seemed a little disconcerted. He stated that he had just received the results of that morning’s blood tests and could not explain it but my liver marker numbers had dropped 500 points overnight. Now, keep in mind that for almost 8 weeks these numbers had only moved higher without any evidence that they would come down anytime soon. He had spoken to the liver specialist who mirrored his opinion that I might just have dodged the biggest bullet of my life. To say the least I was ecstatic. They would delay admitting me and continue to monitor the markers in the hopes that they would indeed continue to decline. They indeed did and at this writing are all now within normal limits. This is nothing short of a miracle. Just when I thought I could see the dim light at the end of the tunnel, new devils would invade my recovery.

The liver and the pancreas work very closely together and are influenced by the illness of either organ. This was proved to be true in my case as the liver failure and subsequent use of high dose prednisone now made me an insulin dependent diabetic. Although the doctors reassured me that once off of prednisone this secondary diabetes would cease, it meant that yet another chink in my treatment would have to inhabit my already distraught and dangerously overloaded brain. So the duties of monitoring blood sugars 4 times a day and adhering to a strict diabetic diet and lastly the administration of insulin 3 times a day became yet another duty and responsibility to digest.

                       

Once released from the hospital after the diagnosis of liver failure, above and beyond the obvious consequences, I started to have disturbing and sometimes disabling symptoms. To describe these symptoms is a very difficult task. The symptoms seemed to wax and wane during the day at different intervals without warning. Because of my need to analyze and understand all things medical, I became more aware of these events during the day in the hopes of trying to prevent them or at least diminish their outcome. It felt most days that I was walking within a veil-draped space; the lights of this space were dimmed to half brightness. I started to think that maybe being new at the diabetes game that this was a manifestation of blood sugar. But blood monitoring proved that this was not the case. Then I thought that maybe it had to do with the use of the high dose prednisone, but prednisone has a very short half-life in the body so if this was true than this symptom of veiled dimness could not be attributed to the prednisone as it occurred even later in the day. Just to keep things interesting, this feeling of an altered half veiled existence was joined by an increasing muscle weakness. I was unable to rise from a chair without the assistance of a table. My gait became unsteady and I would frequently “walk the wall” of my office. This was achieved by leaning against the wall to support myself so I wouldn’t fall. It became increasingly evident that I was not safe to walk unaided and started to use a cane to insure against bodily injury due to a fall. These troubling symptoms occurred slowly and with increasing debilitation. One morning in mid December, I readied myself for work as usual but when I attempted to walk down the stairs from my bedroom to get into my car, I realize that I really didn’t feel right, but got in the car and drove to work. By the time I had reached my destination in approximately 20 minutes, I knew I was in deep trouble. I was experiencing excruciating abdominal pain and weakness so severe that I could not support my weight. I was frightened beyond rationality and knew that something was very wrong. I am a very independent person and it is hard for me to ask for any kind of help but when I reached my office I called in one of my nurses to get to the office as soon as possible and asked one of our medical secretaries to take me to Roger Williams Hospital emergency room. Because of the abdominal pain and its specific location it was thought that fluid around the liver and gall bladder had increased and that possibly the gall bladder was now a present danger. After testing was completed which included CT of the abdomen, blood cultures, chest x-ray and HIDI scan it was determined that there were no stones blocking the bile ducts and after 11 hours in the ER was discharged to home with prescriptions for Percocet for the abdominal pain and Zofran for the nausea. After being in the ER for 11 hours, my bed was a welcome oasis of comfort and warmth. I remained in bed the next day to allow rest and medication to work its magic. At 9:30 that evening I received a phone call from my surgeon’s team stating that we had to discuss the blood cultures obtained the day before. I told him that I had an appointment the next morning with Dr. Katz and this would be discussed then. Being a Nurse I knew what a discussion of blood culture results would mean. I would have to be admitted with the diagnosis of sepsis, which in my case is a very nasty complication. So indeed, I was admitted to my medical home away from home for the second time in 2 months, this time to be treated with powerful antibiotics in the hopes of preventing the progression of the sepsis. IV Vancomycin and IV Zosin were started. These are very powerful antibiotics with equally powerful side effects. One of the side effects is uncontrollable diarrhea. Thus began a 7week battle with unrelenting, debilitating diarrhea necessitating the use of disposable undergarment protection. I am admittedly a very proud woman and for me to admit that to this day I am still in the need of these garments gives me angst and embarrassment beyond measure. And yet, this was not the most troubling symptom. Upon my discharge from the hospital, I was sent home with another 14 days of antibiotics and instructions to rest and do nothing else. The last part of the instructions was easy to comply with, as I had absolutely no strength to walk or navigate stairs or even dress myself. So the next 2 weeks were passed upstairs in my bedroom with my poor husband navigating the stairs to help me with whatever I had to do to wash and change bed clothes and linens and to deliver whatever food he could force me to eat which was very little indeed. I had already lost 35 pounds in a very short time frame. More disconcerting was the fact that my strength was not returning at all. I remained as weak as an infant without the strength to even comb my own hair. For the first time in the almost 4 years of multiple doctor and hospital and laboratory visits, I cancelled all pending appointments with the knowledge that physically I could not even attempt to get ready for these visits let alone attend them. I would concentrate on rest and pray for the return of some of my strength. These prayers remained unanswered. On one of my most desperate and despairing days, I truly felt as if I were an empty vessel, devoid of spirit, stripped of the ability to think and to even move facial muscles. I was a frozen blank stare without soul or substance. By the grace of God, that complete depth of despair only occurred once. I have had many subsequent horrible days but never to the degree that left me speechless and motionless and devoid of soul. This weakness persists despite the healing of the liver and the now discontinued use of insulin. So progress has been made but the lingering weakness and digestive symptoms continue to keep me almost totally housebound. I have experienced some improvement in my thought process and ability to concentrate. I will admit to being a very impatient patient. I want to be well and back to as normal a life as I can hope for given the circumstances and for the first time in my life I am not in control of this timeline. I am at the mercy of my weakened muscles and plagued with its accompanying shortness of breath in everything I endeavor to achieve. I am forcing myself to do a little more each day that I feel well enough. Getting up everyday and dressing and coming downstairs is a must both mentally and physically. Trying to increase activity to include light housework and the care of my beloved plants has helped to keep my mind off of the possibilities that may lie ahead. So in retrospect, although thinking that a return to work and a life as normal as possible is my best medicine, I have had to take a hard look at the reality of my circumstances, and have had to now focus on getting as well as I possibly can for as long as I can and not worry about how long this will take me to accomplish. I admit to being as frustrated as I have every been in my whole life but my reality dictates that now, I must allow my body to heal in its own time, not mine.

It has been determined that all of these distracting, debilitating and confusing symptoms are caused by the use of Yervoy. For me it was a virtual poison. It is so frustrating that the potential savior treatment can indeed be more lethal and problematic than the disease itself.  I continue to live in hope that recovery is just around the corner and as has been true in the past, once recovery begins it will progress quickly but this may not be my reality.

As I write this addition to the saga, I am awaiting diagnostic testing to determine if any of this year of hell has made a difference in the progression of my disease. A PET scan and MRI was ordered and denied by my insurance company. So a subsequent request for a CT of the pelvis, abdomen and chest and again an MRI were approved just yesterday. These tests will determine if the beast is quiet or if it is again mounting an offensive against me tired body. I continue to believe in the will of God Almighty and although I do pray for healing, I also pray for the strength of mind and heart and spirit to accept what is to come not matter what the circumstances.