As I was growing up, I was nurtured by the sun just like plants are. I was outside in the sun every day. When I was a teenager, we used baby oil and iodine to help us get that tan look. (Fry-Baby-Fry)
I became involved in the city recreation age group swimming and diving teams for many years. As I grew older I worked out in the fields for farmers, as a lifeguard, pool manager, and swimming and diving coach during my summers. I also coached football, track, and had outside lunch duty while I was a teacher.
According to the specialists in the field of skin cancer, “…much of the damage that leads to skin cancer occurs in young children and adolescents…”
We did not know what sunscreen was except for the cute Coppertone commercials on the television. I guess you could say I have been a devout “Sun” worshipper all of my life. I had my share of very bad sunburns throughout my lifetime.
The very first time I went to see a Dermatologist he asked me to remove my shirt. The first words he stated were, ” My you have really enjoyed the sun throughout your lifetime.”
On November 22nd of 2010, I went and had my yearly Dermatology exam. The doctor did a thorough exam and then he asked if there was anything I would like to have checked out. I said”, Yes there was a very little spot like a white head on the left center part of my forehead that always bothered me when I wiped sweat off. It didn’t hurt or anything it was just bothersome.”
The Doctor took a look at it and said that it was nothing to be worried about but he would do a punch biopsy to make sure. He numbed the area with a local anesthetic and did the biopsy. He didn’t have to use any stitches; just a band-aid.
Since it was the week of Thanksgiving, he told me he would have his staff call me the next week with the results. I told him that would not be a problem.
The next week passed by without a call from his office. Then the second week passed by also. I had forgotten about the test and continued on with my daily life of running, substitute teaching, and just enjoying life since I had retired from the teaching field.
During the third week, on a Thursday evening about 8:30 p.m., my doctor called me at home and told me that my biopsy had been sent back to Boston because the Pathologists here were having a tough time defining and diagnosing it. They thought it was a grouping of nerve cells that had intertwined but they weren’t sure. They wanted other pathologists to confirm their diagnosis.
The pathologists back in Boston had also agreed to disagree. Finally they came up with the correct definition and diagnosis for this grouping of cells. On December 8th of last year, the bump on my forehead was positively diagnosed as a spot of Desmoplastic Melanoma.
I was told this type of cancer is very aggressive and devastating. It is a type of cancer that doesn’t play by designated rules; like other cancers did.
The doctor told me he had already made an appointment for me with a surgeon. I was to meet with the surgeon on the following Tuesday morning.
After I hung up the telephone, my wife asked who had called. I told her the entire story. I was absolutely numb and in shock. The more it sunk in that evening the more concerned I became.
I worried about it all weekend. I researched this type of skin cancer on the internet. The more I found out about it the more concerned I became. I talked with my sister- in- law and brother- in- law in Salt Lake City, Utah. They are both in the medical field. They suggested I come down there and get into the Huntsman Cancer Institute. It treats nothing but Melanoma type cancers. I said we would have to wait and see what my doctors were prescribing. They told me not to wait too long because of the type of cancer this was.
Upon further research at the Huntsman Institute site, I found that Melanoma is ” The deadliest form of skin cancer, has reached epidemic proportions worldwide, and is the most rapidly increasing cancer in the United States of America.”
On Tuesday morning, I met with the surgeon. He began by looking at this small white head of a bump and then he began relating medical terminology to his nurse. He then said if I had any questions I could ask his nurse and he left the room. His nurse told me that she couldn’t schedule the surgery any sooner than January 3rd.
I told her I could not have surgery until after January 10th because I had committed to some substitute teaching jobs for some dear friends. She said that was okay but I needed to call the hospital and go in for a pre-surgery screening. She said she would send in the orders to the hospital.
I called the hospital that afternoon and set up an appointment for the morning of January 7th.
On the morning of January 7th, I went to the hospital and told them why I was there. We went through the basic paperwork, and the pre-lab exam. They told me that we couldn’t do the lab tests or the EKG because there weren’t any orders from the doctor.
The nurse was kind enough to call the doctor and ask for the order to be faxed to her. We waited for about twenty minutes but no fax arrived. The nurse said she was sorry but there wasn’t anything she could do. So she sent me home.
When I arrived home I called the doctor’s office and the receptionist said that everyone was out to lunch. She would have the nurse call me when she arrived back at the office.
After two hours the nurse called me at home and told me she had just faxed the orders. I asked her what I needed to do now. She told me to call and make another appointment with the hospital but I needed to have it completed before I could check in for the surgery.
I called the hospital and luckily the nurse I had talked to that morning answered the telephone. I explained what the doctor’s office had said. She told me to get myself down there right away and we would finish the exam then. Thank goodness for her because I was not getting any help or information from my surgeon’s nurse.
On January 12, I checked into the hospital. I was a basket full of nerves because I really had no idea of what was going to happen. The first thing that I had to experience was the Radiation Doctor injected the “white head” with lidocaine. Then he injected the north, west, south, and east points of the spot with a radioactive element that stung like acid even though it had been numbed. I had to lie perfectly still for 40 minutes for the elements to travel to certain sentinel lymph nodes. My wife and the Radiation Doctor watched on a monitor as the radioactive element traveled from my forehead down to my left ear and neck. The surgeon would remove these marked nodes because that is where cancer cells had traveled to.
After this procedure was completed, I was directed to the pre-surgery department. I had an IV hooked up to my arm. I was asked more questions for the hospital records. Actually these were the same questions I had answered during my first visit. I guess different departments don’t communicate with each other, even in this day and age of technology.
The Anesthesia Doctor came in and talked with me while he injected the IV with a mild sedative. This was fine because I was really starting to get stressed out. This doctor actually answered some of my questions and gave me some information about the procedure.
The surgeon had gotten behind on his surgery schedule so my surgery was pushed back by two hours. I think I was given the mild sedative two more times before I was wheeled into the surgery area.At this point all I knew or should I say all I was told was that he was going to remove that spot. Oh, was I wrong.
During the surgery that afternoon, the doctor made an incision from inside my hairline to just below my left eyebrow. He removed a section as round as the bottom of a yogurt container from my forehead and went in as deep as the skull. He also removed a sentinel lymph node beside my left ear and two nodes from deep in my neck. He told my wife that he had to go in an inch and a half to get these nodes.
The node incisions he closed and sutured. The forehead opening was packed with cotton balls and compression bandaged to prevent any bleeding. The bandages were actually sutured to the skin to prevent them from shifting.
When I was relatively awake from the anesthesia and given the okay by the recovery room doctor, I was sent home with my wife and told to come back to the doctor’s office on Tuesday morning of the next week.When I arrived home, I looked in the mirror and saw someone who had bandages all over his face. I had a huge bandage on my forehead that looked like the beginning of a Unicorn’s horn. I also had a bandage by my left ear and one on my neck just below the ear.
The pain pills, which had been given to my wife to help alleviate my pain until she could fill my prescription, were very welcome at this point. This had been a very long day for my wife and I. We had arrived at the hospital at 6:30 a.m. and returned to our house at 8:10 p.m.
The weekend went fairly well except for the throbbing in my forehead, my left ear area, and my neck. I used ice on a regular basis to help control the swelling.
On Tuesday morning, I was allowed the luxury of finally becoming privileged to some information involving my case. My wife and I knew nothing about this information beforehand.
They were going to put me back in the hospital again the next day and this time it was going to be for overnight. This was because all of the maneuvering the doctor was going to have to do under the skin would leave me very sore and actually very sick to my stomach. He was very correct about that!
He said they were going to loosen the skin up under the hairline about two and a half inches and then pull it, tuck it under and then stitch it back together leaving as small of a scar as possible. I looked into the mirror and saw the incision they had previously made. The incision went from 1/2 inch below my eyebrow up and across my forehead and into my hairline by 1/2 an inch.
It was basically a partial face-lift that plastic surgeons might do.
The nurse packed and re-bandaged the incision and we headed back home. As we were driving home, my wife and I both questioned each other about knowing any of this information before today. We both came to the same conclusion. We had not been given any of this information prior to today.
We arrived back at the hospital the next day around noon. I was checked into the pre-surgery area again. I actually had the same pre-surgery nurses as I did for the first surgery. We went through the same procedures as before with the IV and the questions. Today the surgeon was not behind and it looked like we were going ahead as scheduled.
The Anesthesia doctor came in to my cubby hole and gave me the pre-sedation. As he was doing this I happened to look across the aisle from me. There was a pretty fifteen year old girl and her father in the cubby hole across the aisle. Just as my bed was being wheeled out of my cubby hole, her doctor had told her they were going to have to remove her nose and upper lip because of a spot on her nose. The scream that came from her was a blood curdling scream that I had only heard in the movies.
I was later told by my nurse that the parents could not bring themselves to tell her about her surgery. They had only told her that her dermatologist was going to remove some acne bumps. They figured the doctor could let her in on the secret after she had been partially sedated.
I am glad that I was being wheeled into the operating room and out of that area.
As I was going into the operating room, where my surgery was going to be done, I remember thinking “Oh Crap, what are they going to do to me this time?”
When I woke up in my hospital room the pain started immediately. The remainder of the night I tried to listen to music to block out the pain-No help or very little. We, the nurse and I, then tried Norco tablets every four hours….took a little edge off but when the pain wanted to scream it would get its own way.
The nurse finally said, “that’s it” and gave me an injection of morphine. She told me that the pain was making my blood pressure raise to a level she did not want to see. The morphine brought the pain down to a low to medium migraine. So we continued this routine, Norco tablets every four hours followed by injections every hour, all night until I was released the next morning at 9:30 a.m. I did not get any sleep at all that night.
When I was released from the hospital the next morning, I was told to keep the bandages dry and clean and the doctor would see me in three days to take out the stitches.
I loaded up on some Norco tablets and eventually slept like a rock when I returned home.
My wife told me that the doctor had come and talked with her after the surgery. She said he was very informative and actually very nice.
When I went to the surgeon’s office to have my stitches removed, I had a new nurse take them out. The stitches came out very easily. I looked like I had a small irrigation ditch running through my forehead but I felt fortunate to this point.
The doctor told me there would be a few radiation treatments to clean up any debris that was left but it would nothing to stress out about. He told me the headaches, the soreness, and the itching under the skin would go away with time.
He had set up an appointment for me to meet with a Radiation Oncologist at St. Luke’s Hospital in the Mountain States Tumor Institute or MSTI department. This appointment would be scheduled in about two weeks. This would give the incision time to heal.
When I went to my appointment to meet the Radiology Oncologist and the Chemical Oncologist at the Mountain States Tumor Institute, I was under the impression that I would have a few radiation treatments and that would be it.
Everyone that I met at MSTI, from the receptionists all the way to the doctors were very sweet and compassionate. The compassion the doctors, nurses, and everyone that worked there had for their patients was truly immense and heartwarming.
The doctors were compassionate but were very matter of fact when it came to this disease. The first doctor, who was a Radiation Oncologist, looked at the incisions I had and said, “Your other doctor did a very good job on your fore head, and neck but I want you to know something-He is a surgeon, a very good one, but still just a surgeon. I am the Radiology Oncologist and you are now mine.
I am setting you up for a brain MRI, a full body PET scan, and a meeting with the Chemo Oncology doctor and the radiation tech staff.”
I met with the Chemo Oncologist right away. I could tell from what she said that she was a very intelligent person. She asked me what stage I was in? I told her I didn’t know because no one had offered me that information. She looked at my file and said that I had stage two. I was one cell away from being in stage three. She said the difference being stage two-NO chemotherapy, stage three FULL interferon chemotherapy. She explained what would happen to me physically and mentally if I would have gone through the Interferon therapy.
She told me that if I had not asked for my dermatologist to check this “white head” out by this time next year at my annual dermatology check there would have been nothing they could have done for me. She said I was very, very lucky.
I was then taken into the radiation room where they were going to fit me with a very tight plastic mask that clicked to the table. It was designed so that for the next five weeks I would be in the same position every day. They told me my eyebrow hairs would fall out, parts of my hairline would fall out, my skin would burn like a sunburn, then blister and peel. They said I could only use the lotions that they gave me because the commercial products were too strong. They also told me I could not use sunscreen for the first year due to the harm it would cause the skin.
The radiation tech person asked, “Have you ever been claustrophobic?” I told them no and asked why. They told me the mask was to be placed in very warm water and then pushed down over my face and clicked to the table. Then the techs would form it to my face with their hands. Once this was completed they would place cold towels over it to solidify its shape.
Then they would take the mask off, draw on my face with a Sharpie pen for future reference points, place the mask back on my face, and make some marks on the mask.
These marks on the mask would help align the laser markings for the radiation treatments. This way the placement of the markers would be exact every single treatment. I was also going to wear a lead eyepiece over my left eye so the radiation would not affect my eye.
From the radiation room, I was sent to the Imagery department. Here they would do the PET scan and the MRI.
I was first given an injection of a radioactive element, placed in a dark room, and told to be as quiet as possible for forty minutes. I couldn’t even talk. When the time period was up, I was led to a restroom. The sign on the outside of the door read “For Nuclear Patients Only”. I highly expected my urine to glow if I turned out the lights. I was then escorted back to the Imagery room and they did the full body scan.
I was then taken to an MRI room, where the technician did an MRI of my brain. Other than a lot of noise this was an easy exam. I was told my doctor would go over the results of the tests on Monday and I was then sent home. I was extremely exhausted after all of this. This was not the few radiation treatments to clean up any debris left from the surgery that my surgeon had indicated.
Once we started the radiation treatments, I was to meet with the doctor every Monday. On the first Monday she told me that the results of the MRI and PET Scans were back and that I had Nodules in my lungs. Oh great some more good news!
She said most people do have them from the air we breathe but she ordered a DEDICATED CAT SCAN of my lungs. This scan was scheduled to take place the next morning. This exam would look at the nodules more closely.
My doctor then guided me back to the radiation treatment room. They handed me a schedule for the next five weeks. I was going to have a radiation treatment every week day at 3 p.m. for the next five weeks.
The technicians had me lay down on a skinny table. They put a pillow under my knees to relieve any back pressure. They then took the mask they had made for me, placed it over my face, pushed it down towards the table until I heard four clicks. This was the mask clicking into its proper position. They placed a lead shield over my left eye.
The technicians then told me they were ready and that they were going to leave the room. They told me not to move. I had my eyes closed but when the machine came on I could see a white light pass over my face. I asked the technician about this and she told me there wasn’t any white light. It could have been the radiation playing with my optic nerve.
As the weeks passed by I developed a sun burn on my fore head, I lost the hair from my left eyebrow and up into my hairline about an inch and a half. During the third week of treatment, when the radiation came on, I could feel a bubbling sensation just under the skin. The technicians said this was a normal occurrence and to make sure I used the lotion they had given to me.
If you ever want your life totally scheduled out, this is one way to do it. You have Radiation treatments every day at 3 p.m., Doctors appointments every Monday at 11 a.m., and then any scheduled tests in between those two. I have seen patients at MSTI spend all day there. First they have their chemo treatment and then they go and have their radiation treatment.
One day while I was sitting in the radiation waiting room and a young man about 22 years of age walked in and sat down. I knew he had just had his chemo treatment because of the bandage on his arm.
As we sat there he began to cry. He kept repeating that he wasn’t going to make it. I was just about to talk with him when the nurse called me back for my treatment. I told her about him, what he was saying, and suggested that he needed to talk to someone. After my treatment was completed, the nurse came up to me and thanked me for saying something. This young man was in a very depressed state and they had checked him into the hospital.
When I went in for my first CAT scan they told me they were going to use a warm iodine solution as a contrast material. I am allergic to Iodine. The radiation technician gave me some medications to take to stop any allergic reactions.
The technician told me when they injected the warm Iodine it would make you feel like you were getting warm all over, and then suddenly you would feel like you are wetting your pants….She didn’t lie. That’s exactly how it felt. She told me she would warn some of her older patients that feeling was going to happen but they still would grab their crotch when it did occur.
The nodule results were fine but as we were walking out the tech told me I probably would have two more CAT Scans about six months apart. About this time, my nose and upper lip had become itchy. It was a slight reaction. I had to sit down for ten minutes with a nurse and an IV in my arm so I could be monitored for anymore reactions.
The second CAT scan went according to plan with no changes in the nodules and no reactions from the iodine.
The third CAT scan results were okay except the nurse was behind schedule and decided the best way to put in a needle is by the perpendicular-vertical method over the parallel-horizontal method. This was to be my last CAT scan but the doctors found a new nodule. So now I have one more to make sure this one has not changed.
Just about the time I feel like everything is coming to an end a new surprise hits the fan.
I finished my radiation treatments and I am still in the process of recovery; both physically and mentally. The doctors said about two years to recover from the surgeries and radiation treatments. My forehead is still sore where the surgeries had taken place. I did have a few chats with the MSTI Social Worker to vent a few anxieties. What a wonderful and caring person she is and will always be a dear friend
When my radiation treatments were over, the radiation tech gave me my mask and told me I could paint it for Halloween to scare kids away from my door or I could paint it in orange and blue colors and wear it to a home Boise State football game. He was a great guy during this time period.
So I have another Cat Scan in August and at the present time I am 15 months clean; with dermatologist, radiation oncologist, and M.D. Doctor appointments set every three months; hopefully all not on the same day. I do not want any more surprises; although the last dermatology checkup I had the doctor asked me if there was anything I wanted checked. I mentioned an area on the back of my left arm, in the middle of the Tricep area.
He looked at it, did a biopsy, and then called me two days later. He told me it was a squamous carcinoma cell that needed to be removed.
Luckily that was an office visit that took very little time. It did cause me some stress because I don’t like needles and to hear him cutting and scraping with the scalpel was not a treat. So I went out on a run to relieve that feeling and to get my head back into my zone that happens during a “runners high”.
These types of occurrences really interrupt my running schedule, my family schedule, and my living schedule.
But because I had my dermatologist check a small white head I am still here, fighting back, and enjoying life.
“Hug Life Like Your Favorite Teddy Bear”