Category: Read Bob’s Story

This Is Getting To Be A Real Pain In The Neck

The next step of my adventure led to an Eye and Ear Hospital at a local health system.  It was a teaching facility that is a well-known part of a local university.  I’ve developed the opinion that if you are a complicated patient, then the teaching setting is usually the best place for care.  This is for a couple of reasons.  First, resources are at an abundance.  Resources refers to equipment, clinicians, and time.   When you have an appointment at a University location you will assuredly first see a physician who is doing a fellowship.  They will be responsible for gathering information and presenting it to the teaching doctor.  They will discuss things, and then at this point the teaching physician will come in the room and repeat the examination process.  He or she will then give you their thoughts and plan of care.  Sometimes you will even be assessed by a Physician’s Assistant or Certified Registered Nurse Practitioner (CRNP).  You’re essentially getting double or triple the time with clinicians compared to a local independent community hospital or clinic.   That doesn’t necessarily mean that the community doctors are not good.  It just means that physicians practicing in a university setting have a lot of help, and it allows them to provide better care.  Moreover, many of the offices are equipped with diagnostic equipment and blood drawing capabilities.  Therefore, you get one stop shopping.  A lot of care can be provided in one location.  If the offices don’t have the equipment, then quite often they are located within a hospital or facility which does have the resources.  A second reason teaching facilities are better for complicated patients is experience.  Years ago, for the most part you picked your doctors by location.  You went to practitioners you were close to or could get to easily.  Today it’s a lot different.  Mainly because of the options available in two key areas.  Specialized physicians are much more available as well as transportation assistance to their offices. Many health systems have reached out to communities with the building of outpatient clinics and diagnostic centers.  The more complicated care is referred to the system’s hub at the teaching locations.  If you are a complicated case these are the people you want to help you.  They have vastly more experience with the more complex, less common cases.

I remember that my appointment was later in the morning on a Friday in early May.  This ended up being a marathon day.  The doctor was late, so it was at least an hour past my scheduled time when I got in the exam room.  A nurse took all my vital statistics, and then a fellow was the first provider to pay me a visit.  He took a detailed history and did a thorough examination.  I didn’t have a huge history, but the forehead was a rare occurrence, so it made things a little more involved.  The physician was next up to visit me.  After examining me, he told me to head to another floor of the facility where I would have a CT Scan.  I followed his instructions, and after about another hour wait I was getting the scan.  CT Scans are quite fast.  Even if you are receiving contrast material.  You do need an IV to introduce the dye, but overall its only like a 20-minute event from IV insertion to scan completion.  By the time I was finished and headed back up to the doctor’s office it was like 6:00 PM.  This is a perfect example of the advantage of the University setting.  All in one building you have the physician’s office, and all the needed diagnostic tools.  The ability to have testing done spur of the moment on a physician’s request is such a great advantage.  In this instance my doctor ordered the results “stat”, hence they were available to him immediately upon radiologist reading.  I was soon back in the exam room waiting for the results.  There was a lot of conversation with the doctor when he presented, but I vividly remember his comments as to what the swelling may be.  He remarked: “I think you’re a 41-year-old man with something in his neck that shouldn’t be there, and it needs to be removed.”  The list of things it could be was too big, and not enough information was known to narrow it down to a diagnosis of any type.  I inquired if a biopsy might be done.  He said if I wanted one he would certainly order it, but biopsies in this area still have a 25% chance of false negative results.  Because of this fact, he wasn’t going to put me through the aggravation of sticking a needle in my neck.  It was going to still be the same plan of care regardless of the results.  And that was going to be: excise the irregularity from my neck.  Therefore, I agreed to moving forward with surgery.  It was scheduled for about three weeks later which took me to very early June.

My boss wasn’t at all in favor of the surgery option at first.  The trunk of your main facial nerve exits your cervical vertebrae in the back base of your skull, passes by and below your ear, and through your parotid gland.  It then branches off in small arms feeding to all the different areas of your face, and making it function.  Her concern was that my facial nerve would be cut during surgery resulting in either temporary or permanent facial paralysis.  She was in favor of waiting a bit longer to see if the swelling dissipated in any way or presented other symptoms giving clue as to what might be causing it.  I totally understood her position, and I certainly was leery of having damage done to my facial nerve.  Over the ensuing few weeks we talked about this several times.  Eventually she conceded that because it was going to continue to be such a diagnostic problem, she agreed surgery had to be the best option.  It was comforting to have her approval going into this situation.  Especially because this was going to be a bit more complicated procedure than my previous year’s.  I was now heading into my second summer of dealing with head and neck surgery.   At least it was a short wait for the surgery date.

Moving Forward With Life

I had the surgery in the month of June and resumed golfing a few weeks later. Per my physicians, there was now a much higher risk of getting a repeat occurrence of melanoma.  Because of this, I was advised to completely protect myself from the sun.  My boss even used the phrase “You can never get sunburnt again”.  Since I was a walker on the golf course using a three-wheeled push cart, I purchased a wide-brimmed farmer type hat to protect my face. Walking for golf exposes you to the sun much more than riding in a covered motorized cart.  I even tried wearing pants a time or two in the beginning. Coming back to play in this manner was just weird and uncomfortable.

Along this whole journey I’ve seen and experienced so many fascinating and odd events with my body.  For example, walking along a golf path on the edge of a dense tree line I noticed my longtime buddy was staring at me.  He stopped me to take a closer look and said to me: “your forehead isn’t sweating above your scar”.  The rest of my face was soaked with sweat as it was a hot July day.   My incision was in the dead middle of my forehead; about 1 inch above the bridge of my nose.  The doctor closed the open chunk of missing skin by pulling the skin above the cut line down and inward like a “V”.  So, you could see a “V” outline almost like how the fabric of fitted sheets pucker on the four corners of your bed.  He was accurate.  There was no sweat in this “V”.  I was only perspiring on each side of the tightly pulled skin and below.  For a few years the whole area was also numb.  This skin texture is no longer visible today, as the skin has stretched out naturally over the years.  I say laughingly that this was like a mini facelift for me.  My receding hairline was helped an inch by this surgery.  The hair on the top of my forehead was about an inch lower than before surgery.  In the beginning I even would get sprouts of hair growing near my incision in the dead middle of my forehead.  It was comical if nothing else.

The remainder of that summer was uneventful.  I recovered fully, and all of my energy returned.  I even started a major house remodeling project that fall, under the guidance of my friend.  My basement was being converted from concrete block walls to a living/game room and small fully equipped kitchen.  A lot of very physical work was completed.  Most of it was being done on weekends.  At some point around late October or early November I noticed something odd.  I don’t even recall what made me notice this.  I found a lump in the right side of my neck. It was under the hinge of my jaw (below my ear lobe). My face is very chubby, so it certainly wasn’t anything easily noticed.  From the outside it appeared to be the diameter of a golf ball.  It was hard to notice it without me craning my neck by raising my chin upward and back.  Whatever this thing might be, it was causing no noticeable pain in the area.  I rationalized it as a swelled lymph node from fighting a cold or flu bug.  Something we can all surely identify with.

A few weeks passed, and I hadn’t thought very much about my neck.  Although I do recall that I never developed any substantial flu, and the lump was still present.  I figured that this couldn’t be anything alarming or uncommon, and that if I asked my boss she would know what it was immediately.  She examined me very well.  By palpitating the whole area.  It was a bit perplexing to her.  Not what I had expected.  She was suspicious of a “reactive lymph node”.   This meant that the node was swelled because of an infection near the wound, or because it was actively healing the wound.  The odd part of this scenario was that surgery was months ago.  It was fully healed, and there were no signs of infection.  So why a lymph node would still be reacting now was the question?  But, there really was no other explanation.  A few more weeks pass by, and now it’s the winter months.  Nothing had changed regarding the lump in my neck.  It did not get larger.  It did not get smaller.   There was still no pain.  Unsure about it, my boss advised me to call my surgeon.  It should have passed by now if it was anything acutely minor.

I got an appointment to see my surgeon in late January 2011.  He too was very unsure what was happening.  I remember his first comment after he examined me, and as we were discussing the reactive lymph node scenario.  “No…..That’s not from me.  I wasn’t in there” was his reaction.   His cutting was an inch or two behind the location of the current growth. He was effectively ruling out the lymph node possibility.  Because of his lack for an answer,  my doctor ordered a radiologic testing procedure called a PET Scan (Positron Emission Tomography).  A PET Scan is based on a very complex yet ingeniously simple scientific theory.   I was told it was originally used as a way of tracking either the progression of malignant conditions, or to monitor treatment therapy for results.  It wasn’t necessarily used as a diagnostic radiological procedure.  The basis of the test revolves around the cellular use of sugar for energy.  Malignant cancer cells have a higher metabolic rate than normal cells, and therefore use much more sugar to function.  You are given a fruit flavored drink which contains sugar that has radioactive isotopes attached to it.  In addition, there is a contrast material injected into your body. These two substances are what allow for the detection of malignant cells.  The malignant cells and areas of higher metabolic activity will absorb the radioactive sugar isotopes.  You can have three areas light up on the subsequent scan.  Your brain, your heart, and your bladder should be seen.  The brain and heart show up because they are areas of high activity using more energy, and your bladder for obvious reasons.  Anything else that shows up needs further diagnostic work. After you’re given the drink and the contrast material, there is a half hour or so wait until you lie on the CT Scan table.  It may be a faster scan with today’s technology, but for me it was about a 3.5 hours on the CT table.  Remember that this is a full body scan.

My results came a few days later via a call from my doctor’s nurse.  They were pretty good for the most part.  The phrase used to indicate spots of concern are called “areas of uptake”.  Adjectives are used to describe it such as “area of intense uptake”.  I had a few mesenteric lymph nodes show up weakly.  Those are in your abdomen.  Mesentery refers to a layer of “fabric” that holds your organs to the inside wall of your abdomen.  These weren’t a concern to doctors, but they were to be a foreshadowing of looming events.  The most important thing was that my neck had no areas of uptake, although there was one spot that did.  That area was my butt.  Yep, that’s right, my butt.  I told the nurse that it must have been because of a pilonidal cyst I had on my tailbone.  It still had to be checked out visually.  I thought to myself.  Are you kidding me?  So embarrassing.  I went back to see my surgeon for a review of the results.  I told him the cyst had been infected in the past so that must have been the source or reason for the uptake.  He examined me and couldn’t find any infection or area where an abscess had manifested.  It was decided that the cyst must be the source of the uptake, but since there was no serious infection it did not need treated.  Subsequently, I was referred to an ear, nose, and throat doctor for further evaluation regarding the oddity in my neck.

Recover and pathology

Work was a pretty good place for me to be on a daily basis.  I received wound care as needed. My boss and one of the wonderful nurses checked me regularly.  At this point, two events occurred which in retrospect were foreshadowing my future. First, as time progressed, my forehead stitches became a nuisance.  Because of the type of incision and its aesthetic location; my wound closure entailed first suturing the tissue inside, and then merely applying Steri-Strip dressing and compound to the outside.   For those who haven’t experienced these, the Steri-Strip dressings are thin rectangular super sticky strips of tape.  The compound is a sealing/binding glue spread over the incision to both stabilize and protect the opening.   The internal sutures will dissolve and the outside has less scarring since no thread is used.  The hang up was that my internal sutures weren’t dissolving; rather my body was rejecting them, or “kicking” them out of my body. My nurse friend at work was pulling on little “nubs” of thread sticking out of the incision.  On the other end of these nubs were tumbleweeds of thread, for lack of better words. This happened multiple times for the next few months.  My body was rejecting the sutures before they had a chance to disintegrate.  Secondly, after chewing, the left side of my face would swell rapidly.  The swelled area was right in front of my left ear lobe where the hinge of the jaw is located.  It would grow to the size of a golf ball.  I showed it to my boss who said it was actually my parotid gland filling up with fluid as I chewed.  The fact that it was my parotid gland is somewhat important for future chapters.  This gland is the largest of your three salivary glands.  At its highest point it starts on a level with your ear opening, and extends wrapping just under the hinge in your jaw. She called my surgeon to make sure he was in agreement with her draining it as it swelled.  He of course was fine with it.  So each time this happened in her presence she would stick a needle in my face/neck and suck out a yellow tinted, but clear fluid.  It was a very effective technique left only to the most experienced of head and neck surgeons.  The trunk of your main facial nerve passes through the middle of the gland.  Therefore she had to get the needle in the gland, BUT NOT IN THE FACIAL NERVE. She did it with precision each and every time.  This was done for a few weeks until it stopped filling up with fluid.

Now on to the most intriguing part of this whole mess I got myself into. The pathology of the skin and lymph nodes.   Was the lesion completely removed this time?  Did my lymph nodes come back clean?  It took about a week to find out.   The relieving and most important part was that my lymph nodes were clear of melanoma cells.  Spic n’ span clean.  That meant this episode was brought to an end.  I would need no further treatment.   My surgeon explained that he thought the lesion had been caught just as it was changing into melanoma at the cellular lever.  If it had been left longer I would have been in a very bad position. But I wasn’t! To an extent it will always be shrouded in mystery since the spitz nevus and melanoma look identical at the cellular level.  That was irrelevant anyway since I was in the clear.  Now I can be relieved and move on with life back to normal.  At least that’s what I thought….

An Unnerving Experience

The events of my surgery day are stored vividly in my memory.  I recall arriving at the surgery center, talking to the reception workers, and filling out paperwork.  Never having surgery meant not knowing what to expect that day.  Having had 21 surgeries since this; it’s all “old hat” to me now.  I was nervous while lying in the Pre-op area and waiting to see my anesthesiologist and surgeon.  They both speak to you and get your consent before your visit to the operating room.  It was about an hour wait in pre-op before being taken back to surgery.  Once I did go, I remember the most incredible feeling as my bed was rolled to the operating room.  I had been given me some of the drugs which are part of the anesthesia cocktail.  It felt like nothing in the world was wrong or could go wrong.  Complete ecstasy.  You don’t always get those drugs on the way to the OR, but I think they sensed my nervousness, so they injected them a few minutes early.  I was thankful.  I remember coming out of the anesthesia.  Waking  as they were removing the intubation tube from my throat, and choking for a few brief seconds.  The staff was talking to me.  Asking me to wake me up; open my eyes.  After that rough first few minutes, I regained my faculties fairly quickly.

Upon leaving it was a bright sunny summer day.  I could hardly see anything between the blinding sun, bandages, and anesthesia.  There was no pain.  I soon found out how difficult sleeping with an incision on each side of your neck and one on your forehead was going to be.  You sort of just lie there like a mummy.  Recovery was fairly fast.  At first the swelling was severe; lasting several days.  When the swelling was at its worst, there was some pretty intense pain from all of the pressure. I remember taking ibuprofen, and then seeing serous fluid actually leak out of the pores of my cheeks as it relieved the swelling.  It looked like my cheeks were crying.  Little teardrops everywhere.  That’s how much pressure was being exerted on my skin from the inside.  Once that swelling went down, I was well on the way to recovery.  I returned to work about five days later.

The Longest Weeks

The weekend and Monday passed by, and Tuesday brought the results from the clinic as follows: NOT likely to be melanoma, rather it is “favored” to be a severely atypical dermal Spitz nevus.  What the hell is that? Answer is….. it’s a whole lot of craziness.  I ended up at a melanoma specialist at a local cancer center.  He had gone to school with my boss and they are still friends to this day.  Incidentally, I still see him occasionally. He is one of the greatest physicians I’ve ever met, and an even better person.  So, what is a Spitz nevus?  I was very confused when he first explained this to me. If you have a Spitz nevus at birth, or develop one as a child, they are totally harmless.  But, if you acquire one later in life as I did; it’s a totally different set of circumstances. My lesion developed over a span of about three months during my late thirties.  Its maximum size was about that of an eraser on the end of a pencil.  It had been there roughly 4 years at the time of removal.  Unlike a Spitz nevus that has developed early in life, one occurring in mid-life is at risk of converting into melanoma. A problem with Spitzoid tumors is that under microscopic observation the cells of a melanoma and Spitz are essentially identical.  The difference lies in their behavior.  Spitz nevus cells are benign; while melanoma cells are aggressive, metastatic, and deadly. My specialist at the cancer center said the only way to truly know if mine had converted to melanoma would be to do nothing and see if I was alive in five years.  He was that frank with me, and I appreciated it.  The protocol for treatment of this type of tumor involved a second forehead surgery to excise a larger football shaped piece of skin.  About 1.5” wide at its maximum point, and 1” from top to bottom at its largest.  In addition, I needed to have lymph nodes removed and checked for melanoma cells.  If melanoma cells were to show up in my lymph nodes then it was going to be a bad prognosis.  If my nodes proved negative for the cells; that was good.  It meant that either it had not yet changed into melanoma, or it had changed but not spread.  

     Surgery was scheduled for 6 weeks later.  Ugh.  That’s a long wait!  That was the tough part.  My first experience with this type of thing, and I must wait that long to find out what my future was to hold.  I recall the weekend before surgery being the toughest.  I was nervous. Not even just about what I was going to find out regarding the lymph nodes, but maybe even more about the cutting into my forehead and neck (lymph node location). The procedure involved a two-day event. Tuesday of that week was something called a lymphoscintigram, and the actual surgery was the next day.  A lymphoscintigram is done for finding to which lymph nodes my forehead “drains”.  Those would then need to be removed the next day. A lymphoscintigram is not an awful procedure by any means, but it’s not very pleasant either. The patient lies on a table; which is part of a scanning device.  A syringe is then filled with contrast dye. Contrast dye is a substance that shows up on radiological testing. Six injections of the dye go into the forehead.  Not just injected subcutaneously (just under the skin), but the needle firmly pushed against your skull.  A bit painful.  You are warned of this so you’re prepared.  There can’t be any sudden movements. The scanning device then tracks the dye to the lymph nodes which the forehead drains.   The sight of my forehead lesion happened to drain to lymph nodes on both sides of my neck. Located just about an inch forward of my ear lobes, and one inch below my jaw.  Therefore, I was facing three total incisions the next day.  I remember being mentally exhausted after the lymphoscintigram. This was all such a new disconcerting experience to me. One which I will soon begin to accept as a regular part of my life.

An Introduction to Life and Science

Now….what was malignant melanoma?  Again, not being too knowledgeable; I knew it wasn’t good, but I really didn’t know how bad it could be.  This being the case, I showed it too one of our nurses.  Wow, did that cause a ruckus!  Within three minutes there were four co-workers around me looking at the results.  The one nurse was even crying.  What the heck! I still didn’t quite understand their reaction, but I knew now that it was not a favorable pathology report. The surgeon (our boss) was leaving Saturday, May 8th for a cruise out of a port in Greece. Therefore,she was not planning to come in that day. Well, she did end up coming in.  They called her.  

    I’m thinking this sounds more dramatic than it really was.  It’s somewhat hard for me to know since I lived it.  I don’t feel like an objective judge of that.  Regardless, this is how it happened.  After my boss arrived, I remember seeing her sitting cross-legged up on the counter in the reception area holding my report. A little bit teared up.  She was upset because she was trying to figure out where she had gone wrong.  The lesion did not at all look like melanoma, nor do I fit at all into the high-risk categories for it.  The reason she was concerned now was due to the size of the lesion.  In melanoma the size of the lesion when discovered is very important.  They are very aggressive and metastatic.  A lesion caught before exceeding a size of 7 millimeters likely has not gotten into your lymphatic system.  The lymphatic system is its pathway to spread throughout your body.   Being that the size of my lesion was over that threshold she had concerns.  However, my case had been forwarded to a specialist in the pathology department at the Mayo Clinic, and that meant there was at least some doubt as to what the accurate diagnosis might be.  I had to wait for the Mayo Clinic to issue their report and move on from there.

A Single Day Changed My Life Forever

I vividly remember the day my life changed forever.  May 7, 2010 was a beautiful sunny spring day.  It was a Friday.  Golf season had just begun a few weeks earlier.  I was very excited for that season because I had surprised myself and won the championship of our golf league the prior year.  I couldn’t wait to get out and play that weekend since it was going to be great spring weather.  I worked for a surgeon at the time, and I had gotten to work just before 8:00 AM.  That day the front office receptionist was coming in late, so I had agreed to cover for her until she arrived.  Before I detail the upcoming events; lets jump backwards to Tuesday, May 4th of that week.   The surgeon I was working for removed a lesion from the center of my forehead that day.  She didn’t like how it looked cosmetically and had been asking for some time if she could remove it.  The doctor didn’t have any concerns that the lesion was posing any danger to me medically; she just thought it was unsightly.  That wasn’t untrue; so, I agreed to let her take it off.  Bouncing again to thatFriday, May 7th, I arrived behind the reception desk and walked over to retrieve the documents which had come overnight on the fax machine.  I rifled through the papers and saw a page with my name on it.  It was a pathology report.  Now, at this point in my life I was not very knowledgeable of the process for my type of surgical case.  Heck, to this point in my life (I was 39 years old at the time) I hadn’t even had stitches.  Anyway, it’s protocol to always send excised lesions for pathological examination.  This was the report on my forehead tissue.  “Malignant melanoma and forwarded to the Mayo Clinic for further examination.”