Upon parking the car in the garage Mitzi guided me into our family room and had me sit on the dual recliner love seat, which was to become my base of operation for the next few weeks. Carri had followed us in her own vehicle and when she arrived Carri and Mitzi made a plan for picking up the prescriptions and other supplies we might need and Mitzi subsequently left to pick up those items. I was happy to be in my familiar surroundings. I had a small challenge trying to find an appropriate shirt to wear around the house because the incision in my neck was just painful enough that I couldn't tolerate anything rubbing against it. We solved that problem by taking an old T Shirt and cutting it straight up the middle then using a safety pin to fasten it about half way between my waist and neckline which worked out perfectly until Mitzi was able to find me a pair of pajamas at Kohl's later in the week that provided the same comfort.
Carri spent the night sleeping on the sofa in the adjacent living room; not because we didn't have a bed for her but to satisfy her concern that she wanted to be available if something "happened" and the living room was much closer to where I was located than was the spare bedroom. It was a very sweet gesture on her part. Mitzi slept in the Master bedroom and I spent that first night (as well as the next 6 or 7) on the recliner, semi-sitting. Because of the 2 drains in my neck and still tender wound I couldn't lay down but fully reclining in the chair was akin to the sleeping arrangement I had in the hospital but with far less noise. Nothing "happened" that night (or any other). Carri spent the next day working on her computer and keeping track of me so that Mitzi was able to run errands and try to get our home in order. Toward the late afternoon Carri packed up and headed back to her home in San Diego and her husband and two children after confirming we would be able to get along just fine on our own.
Mitzi left a stack of mail for me that came in while I was in the hospital. I started to sort through the pile the first morning I was home and among the golf magazines and catalogs was a large white envelope with the return address "New South Wales Government - Justice and Attorney - State Coroner's Court". I knew exactly what the envelope contained but I couldn't bring myself to open it. "Tomorrow" I found myself thinking "I'll be up to opening it tomorrow". There hadn't been a minute since Geoffrey died in October that he wasn't with me. The night stand next to my bed has a candle from his service and a lock of his hair in a red velveteen pouch is tied around the candle. His photos are all over our home interspersed with photos of all of our children and grandchildren. Far more often than when he was alive I find myself wondering what he would have thought about something or how would have reacted to a situation. My self talk includes regular unilateral dialogue with Geoff. Mostly I find myself being sad about my sense of loss and the grim reality that I will never see his incredible smile or hug him hello or goodbye or hear his voice again. But I'm also pissed off mad that all of these interactions have been taken away from me, his mother, Melissa, Joanne and the countless other family members and friends that knew him and loved him so much. My expectation was that the envelope would provide some answers but most likely even more questions. I wasn't ready for either so I didn't look at the documents.
Over the next few days I progressed from a purely liquid diet (protein drinks, ensure, fruit juice) to some soft foods like pudding and generous amounts of ice cream. My speaking gradually improved and the incision seemed to be healing up nicely but was begining to become obscured by my new full beard as I was unable to shave. I had very little pain but occasionally my swollen tongue or the neck wound would be uncomfortable. My first few days at home were spent watching various golf tournaments or other sporting events on television between frequent naps. Mitzi was able to take care of the drain in my neck without much challenge and save for a visit from a home health nurse on the first Saturday we had virtually no interaction with any other healthcare professionals as we never felt the need.
I don't remember exactly when it was but after a few days of having that big white envelope staring at me I finally tore it open and removed the contents. There was a cover letter with all the expected platitudes and invitations for questions followed by a thick stack of paper, comprised of a 16 page document entitled "POSTMORTEM EXAMINATION REPORT FOR THE CORONER" along with 4 additional pages of forensic and patholigical information.
On page 2 of the examination report under the heading of "OPINION" was the statement "Geoffrey Loe died on 6 October 2010 at St. George Hospital and that the cause of death was as follows:
1. DIRECT CAUSE: Disease or condition directly leading to death:
(a) DISSEMINATED DIFFUSE LARGE B-CELL NON-HODGKIN'S LYMPHOMA
ANTECEDENT CAUSES: Morbid conditions, if any, giving rise to the above cause, stating the underlying conditions last:
(b)
(c)
2. Other significant conditions contributing to the death but not relating to the disease or condition causing it:"
There is no misprint in the above or typographical errors. The Antecedent causes were blank in the coroner's report as was the the area for "other significant causes". I started flipping through the other pages but my concentration had been intercepted. What happened to the Glandular Fever theory? Why isn't that at least mentioned as an underlying condition or a signficant contributing condition? We had been told that the likelihood that the Lymphoma had returned was very low or that even if it had, that it was the primary cause of death was a remote possibility by Geoff's doctors (see "Meeting the Doctor" posted to this blog December 3, 2010). Why does the report reference Large B-Cell Non-Hodgkins Lymphoma when Geoff had previously been treated for Hodgkin Lymphoma? As I leafed through the rest of the documents and quickly put the report back into the envelope I found myself with feelings of disbelief and betrayal. I knew I would need an opportunity to pursue my questions about the report and the treatment he received. I also knew I didn't yet have the energy to pursue those questions right away.
Thursday, February 24, 2011
Wednesday, February 23, 2011
Surgery
35 days ago I wrote about my upcoming surgery for Tongue Cancer. I checked into Loma Linda University Hospital with the assistance of my wife, Mitzi, shortly before 5 a.m. on January 21, 2011 after spending the previous day in various pre-op examinations and consultations at the hospital and then the night at the Loma Linda Inn. The Loma Linda Inn is located directly adjacent to the hospital, was definitely no frills, but proved to be a good spot to hang out before my surgery as well as a place for Mitzi and a number of other family members to retreat and at least attempt sleep or rest for a few days after my surgery was completed. After a last meal of a double double (my choice) at the nearby In and Out Burger we made a round trip to our home in the Palm Springs area to do some last minute packing and returned to the motel in the late evening of January 20. Surprisingly, I was able to get a few hours of sleep before our appointed arrival time at the hospital but certainly didn't need an alarm clock to wake up.
Once at the hospital we were escorted to the pre-op staging area in military like fashion with 4 or 5 other families that had similar appointments but no doubt for other reasons. After the march through the hallways and an elevator ride to an upper floor of the hospital we were assigned to a particular area of the facility, separated from the other occupants by only haphazardly drawn curtains. I was required to exchange my clothing for the requisite hospital gown, open to the back, just like in the movies. The uncomfortableness I felt donning the gown was the last vestige of any sort of personal dignity or modesty I would feel for the next number of days. Once appropriately attired I climbed into the bed to which I was assigned and patiently waited for the procedures to begin. We knew that Carri and Candi were on their way to Loma Linda at this early hour and could only hope they would make it so that I could see them before I was wheeled away to the Operating Room. Between blood pressure, temperature and heart rate checks it was discovered that within the voluminous paperwork that made up my "chart" a specific consent form that was to be signed by my surgeon and me was missing. The nurses seemed a little agitated about the missing document and paged my surgeon. While waiting for the surgeon to respond I noticed most of the other folks involved in similar pre-op routines were being wheeled out of the staging area. The delay, although short, proved to be fortuitous because Candi and Carri arrived within minutes of the time I was to be taken since the missing paperwork snafu had been corrected and I was able to visit for a short amount of time with them before the real fun began. Had the missing document never been I would have been removed from this area of the hospital without having the opportunity to see them before the surgery. It was comforting being able to spend those last few minutes with my wife and 2 oldest daughters and it kept my mind off what was to quickly be my reality.
An orderly was summoned to wheel me from the staging area to a more official pre-op facility that didn't allow for visitors. There was then a process that included the starting of various IV lines and other preparatory requirements that typically involved needles during which I was asked no less than 5 times if I knew where I was and why I was there. Apparently I answered all the questions correctly. I was visited by my surgeon, Dr. Paul Kim, a head and neck surgeon and a professor at the Loma Linda University Medical School along with his assistant. He reviewed the impending surgery with me and drew lines on my neck to indicate the pattern of incision. I was then introduced to the anesthesiologist who described his process and involvement and had his own battery of questions for me. He then told me he was going to inject something to relax me into one of the various lines of fluid that were routed into the back of my wrist. I vaguely remember being wheeled into the operating room that was abuzz with activity and having a number of people introduce themselves to me in my waning consciousness.
I have had general anesthesia more than once before this surgery and it always strikes me that, unlike sleep, you cannot account for the time. There is no dreaming, no sense of what is taking place, just a large black hole in one's reality that begins when the anesthesia takes hold of your awareness and ending in some recovery room at a future point in time. The time that had passed could have been 20 minutes or a month, you have no way of knowing without someone else telling you. I remember awakening on Saturday, January 22 at approximately 9:00 a.m. (or so I was told) and immediately set upon by 2 male anesthesiologists who, after quickly ascertaining my level of consciousness, rudely removed the nasotracheal intubation equipment (breathing tubes inserted in my nose) apologizing all the way but explaining that it was necessary to perform this procedure while I was awake so that I would begin breathing on my own. If I wasn't fully awake before I was then. Mitzi arrived soon after in the Intensive Care Unit (ICU) and told me that I was doing well and that I had an incision that ran from my right ear to the left side of my mouth, roughly along my jaw line, that I was missing approximately 1/3 of what was my tongue and 40 lymph nodes, more or less, from the right side of my neck. She went on to tell me that Dr. Kim had told her that he was very happy with the results of the surgery and felt he had achieved some very clean margins on the tumor and saw nothing unusual in the lymph nodes he had removed. As part of the surgery I had a portion of the tissue directly beneath my chin removed (submental island flap) that was utilized in the reconstruction of my tongue. I came to learn later the official nomenclature for the surgery "Hemiglossectomy with submental island flap and selective neck dissection". I had a nasal gastric tube inserted and sutured in for feeding and various IV lines running in and out of both wrists and one ankle. There were 2 drains emanating from either side of my neck. Mitzi told me over and over how worried she had been and how happy she was to see me awake and I understood her relief and tried as best I could to reassure her of my own sense of well being now that I was fully awake, even though I was unable to speak, through eye contact and head nods. She had plenty of company during my surgery and the following hours; her father, George and his wife, Cheryl, Carri, Candi and Mitzi's daughter, Katie. Katie and Carri had spent the night with her at the Loma Linda Inn and Mitzi expressed how grateful she was for the support. Carri had gone home to San Diego earlier that morning and Katie was going to stay with Mitzi at the hospital for the balance of the day.
I spent the next 3 days in the ICU and was moved to a regular room on Monday evening, January 24. A number of people came by for visits, including Candi and her husband, Shawn and my neighbors, Jacques and Matilde. Mitzi also related a funny (in retrospect) story about my business partner, Art Alvarez, who decided to come by the hospital on Friday evening. Not knowing that I was still under the anesthesia and would be for another 12 hours he was allowed into my room in the ICU around 8:00 p.m. on the night of my surgery. Apparently I was laid out, head fully tilted back with the new incision in full view. He later wrote in an email to Mitzi describing his visit "...not for the squeamish!". I had a few challenges with choking, primarily related to the nasal gastric (NG) feeding tube and a reaction to morphine that caused me to reject additional offers of the pain killer.
On Tuesday morning, January 25 I was told by the doctor that visited me during his rounds (an associate of my surgeon) that I could go home as soon as I demonstrated the ability to swallow. Further, that they felt my progress had been so good that they were willing to remove the NG before releasing me as long as they thought I could get sufficient nutrition by way of my mouth. By then I was able to croak out a few words around my very swollen tongue but let the doctor know in a most adamant way that I was prepared to demonstrate my ability to swallow as soon as they would allow me having no idea if, in fact, I actually could pull it off. Around noon time I was brought a tray with some vegetable based broth, a small container of green jello and a cup of cold decaf coffee. I managed to slurp down enough of the substances that were pawned off as food to convince the nurse I had the ability to swallow and she communicated my accomplishment to the doctors' office. While awaiting my discharge order I was visited by the physical therapist who made a few laps around the floor where my room was located with me. Earlier that day I had been allowed to sit in a chair in my room which was the first time I had been out of bed for more than a few minutes. In the late afternoon I was visited by an associate of my surgeon who confirmed I was to be released that evening, wrote me a couple of prescriptions for antibiotics and hydrocodone and gave Mitzi instructions for the drain that was still sutured into my neck. The doctor told us to make an appointment with Dr. Kim for the following Tuesday (February 1) and when I inquired if the pathology results from the tissue and lymph nodes that had been removed were available was told that information would be provided at our appointment the following week. The doctor then roughly removed the NG tube upon which happening gave me instant relief and pleased me greatly in spite of the discomfort associated with its extrication.
I chose to walk out of the hospital after getting dressed rather than use the offered wheel chair and while Carri (she was going to spend the night at our house to help out) and I rode the elevator down, Mitzi had gone ahead to pull the car around to the front door. I climbed into the passenger seat on what was a cool night and exhaled the sigh of relief one experiences when knowing that a challenge has been successfully met. Mitzi piloted the car to the San Bernardino freeway and began the drive back to our home.
Once at the hospital we were escorted to the pre-op staging area in military like fashion with 4 or 5 other families that had similar appointments but no doubt for other reasons. After the march through the hallways and an elevator ride to an upper floor of the hospital we were assigned to a particular area of the facility, separated from the other occupants by only haphazardly drawn curtains. I was required to exchange my clothing for the requisite hospital gown, open to the back, just like in the movies. The uncomfortableness I felt donning the gown was the last vestige of any sort of personal dignity or modesty I would feel for the next number of days. Once appropriately attired I climbed into the bed to which I was assigned and patiently waited for the procedures to begin. We knew that Carri and Candi were on their way to Loma Linda at this early hour and could only hope they would make it so that I could see them before I was wheeled away to the Operating Room. Between blood pressure, temperature and heart rate checks it was discovered that within the voluminous paperwork that made up my "chart" a specific consent form that was to be signed by my surgeon and me was missing. The nurses seemed a little agitated about the missing document and paged my surgeon. While waiting for the surgeon to respond I noticed most of the other folks involved in similar pre-op routines were being wheeled out of the staging area. The delay, although short, proved to be fortuitous because Candi and Carri arrived within minutes of the time I was to be taken since the missing paperwork snafu had been corrected and I was able to visit for a short amount of time with them before the real fun began. Had the missing document never been I would have been removed from this area of the hospital without having the opportunity to see them before the surgery. It was comforting being able to spend those last few minutes with my wife and 2 oldest daughters and it kept my mind off what was to quickly be my reality.
An orderly was summoned to wheel me from the staging area to a more official pre-op facility that didn't allow for visitors. There was then a process that included the starting of various IV lines and other preparatory requirements that typically involved needles during which I was asked no less than 5 times if I knew where I was and why I was there. Apparently I answered all the questions correctly. I was visited by my surgeon, Dr. Paul Kim, a head and neck surgeon and a professor at the Loma Linda University Medical School along with his assistant. He reviewed the impending surgery with me and drew lines on my neck to indicate the pattern of incision. I was then introduced to the anesthesiologist who described his process and involvement and had his own battery of questions for me. He then told me he was going to inject something to relax me into one of the various lines of fluid that were routed into the back of my wrist. I vaguely remember being wheeled into the operating room that was abuzz with activity and having a number of people introduce themselves to me in my waning consciousness.
I have had general anesthesia more than once before this surgery and it always strikes me that, unlike sleep, you cannot account for the time. There is no dreaming, no sense of what is taking place, just a large black hole in one's reality that begins when the anesthesia takes hold of your awareness and ending in some recovery room at a future point in time. The time that had passed could have been 20 minutes or a month, you have no way of knowing without someone else telling you. I remember awakening on Saturday, January 22 at approximately 9:00 a.m. (or so I was told) and immediately set upon by 2 male anesthesiologists who, after quickly ascertaining my level of consciousness, rudely removed the nasotracheal intubation equipment (breathing tubes inserted in my nose) apologizing all the way but explaining that it was necessary to perform this procedure while I was awake so that I would begin breathing on my own. If I wasn't fully awake before I was then. Mitzi arrived soon after in the Intensive Care Unit (ICU) and told me that I was doing well and that I had an incision that ran from my right ear to the left side of my mouth, roughly along my jaw line, that I was missing approximately 1/3 of what was my tongue and 40 lymph nodes, more or less, from the right side of my neck. She went on to tell me that Dr. Kim had told her that he was very happy with the results of the surgery and felt he had achieved some very clean margins on the tumor and saw nothing unusual in the lymph nodes he had removed. As part of the surgery I had a portion of the tissue directly beneath my chin removed (submental island flap) that was utilized in the reconstruction of my tongue. I came to learn later the official nomenclature for the surgery "Hemiglossectomy with submental island flap and selective neck dissection". I had a nasal gastric tube inserted and sutured in for feeding and various IV lines running in and out of both wrists and one ankle. There were 2 drains emanating from either side of my neck. Mitzi told me over and over how worried she had been and how happy she was to see me awake and I understood her relief and tried as best I could to reassure her of my own sense of well being now that I was fully awake, even though I was unable to speak, through eye contact and head nods. She had plenty of company during my surgery and the following hours; her father, George and his wife, Cheryl, Carri, Candi and Mitzi's daughter, Katie. Katie and Carri had spent the night with her at the Loma Linda Inn and Mitzi expressed how grateful she was for the support. Carri had gone home to San Diego earlier that morning and Katie was going to stay with Mitzi at the hospital for the balance of the day.
I spent the next 3 days in the ICU and was moved to a regular room on Monday evening, January 24. A number of people came by for visits, including Candi and her husband, Shawn and my neighbors, Jacques and Matilde. Mitzi also related a funny (in retrospect) story about my business partner, Art Alvarez, who decided to come by the hospital on Friday evening. Not knowing that I was still under the anesthesia and would be for another 12 hours he was allowed into my room in the ICU around 8:00 p.m. on the night of my surgery. Apparently I was laid out, head fully tilted back with the new incision in full view. He later wrote in an email to Mitzi describing his visit "...not for the squeamish!". I had a few challenges with choking, primarily related to the nasal gastric (NG) feeding tube and a reaction to morphine that caused me to reject additional offers of the pain killer.
On Tuesday morning, January 25 I was told by the doctor that visited me during his rounds (an associate of my surgeon) that I could go home as soon as I demonstrated the ability to swallow. Further, that they felt my progress had been so good that they were willing to remove the NG before releasing me as long as they thought I could get sufficient nutrition by way of my mouth. By then I was able to croak out a few words around my very swollen tongue but let the doctor know in a most adamant way that I was prepared to demonstrate my ability to swallow as soon as they would allow me having no idea if, in fact, I actually could pull it off. Around noon time I was brought a tray with some vegetable based broth, a small container of green jello and a cup of cold decaf coffee. I managed to slurp down enough of the substances that were pawned off as food to convince the nurse I had the ability to swallow and she communicated my accomplishment to the doctors' office. While awaiting my discharge order I was visited by the physical therapist who made a few laps around the floor where my room was located with me. Earlier that day I had been allowed to sit in a chair in my room which was the first time I had been out of bed for more than a few minutes. In the late afternoon I was visited by an associate of my surgeon who confirmed I was to be released that evening, wrote me a couple of prescriptions for antibiotics and hydrocodone and gave Mitzi instructions for the drain that was still sutured into my neck. The doctor told us to make an appointment with Dr. Kim for the following Tuesday (February 1) and when I inquired if the pathology results from the tissue and lymph nodes that had been removed were available was told that information would be provided at our appointment the following week. The doctor then roughly removed the NG tube upon which happening gave me instant relief and pleased me greatly in spite of the discomfort associated with its extrication.
I chose to walk out of the hospital after getting dressed rather than use the offered wheel chair and while Carri (she was going to spend the night at our house to help out) and I rode the elevator down, Mitzi had gone ahead to pull the car around to the front door. I climbed into the passenger seat on what was a cool night and exhaled the sigh of relief one experiences when knowing that a challenge has been successfully met. Mitzi piloted the car to the San Bernardino freeway and began the drive back to our home.
Subscribe to:
Comments (Atom)