Miracles: How do we explain them or should we even try?

Bruce Larson after the October 28 surgery

Today is October 29, 2014. I had surgery yesterday to remove 2 nodules left behind from the previous surgery in March, 2014 and to remove a lymph node that had grown in size from the previous CT Scan. A biopsy will also be taken from inside the mouth along the gums.

In the course of the surgery, the doctor came out to discuss the progress with Vida. He said he could not find the lymph node! The very lymph node that appeared on the CT Scan and referenced on the scan results report. There is a story behind this I want to share.

When Vida's daughter, Jessie, first learned of my cancer several months ago, she wanted me to go to a revival service with David E. Taylor. He is referred to as an "Apostle" and travels throughout the country and to various other countries to spread the word of Jesus Christ. He is also known as a "healer" and has evidently cured many of their cancer. Jessie is in the US Army stationed in Texas. She told me she has been to several of David E. Taylor's revivals and that he can heal my cancer. All of the revivals were in cities far away until October when he came to Orlando. I decided I would go, but Vida was not interested. I was disappointed, but told Jessie I would go even if Vida did not. The night of the revival, Vida decided to go with me.

We were the first guests to arrive at Victorious Living Church in Orlando where we were warmly greeted by a member of the church staff. He asked why we came and I told him about the cancer situation. Once the service started, we saw him sitting on the stage with other church “dignitaries.” Everyone we met was extremely nice and most went out of their way to greet us and welcome us into their church. That was very impressive and sadly that is not seen very often.

The congregation was predominantly Black and it was quite a lively Gospel-in-motion explosion that kicked off the event. It was a very active and animated congregation that was dancing in the aisles and waving their hands giving thanks to Jesus Christ. The feelings and emotions generated in that sanctuary were contagious. And when a member of the congregation yelled out “Amen,” we could tell they meant it. There was no acting out or pretense. It was, and remains, fascinating.

Once Apostle David entered into the service, it became a revival. One definition

David E. Taylor Revival in Orlando

of revival is “restoration to life, consciousness, vigor, etc.” The term, revival, I think, has a bad name. I used to hear the word and I would immediately think of a tent set up with false prophets out to make a quick and easy buck. My perception has changed. At least when it comes to David E. Taylor. He said that he felt there were five people present that had cancer.

A long and complex process took place when Apostle David cast out any sicknesses that may have been in the congregation. Then, one by one, people lined up at the stage to explain what aliment they had such as back pain, migraine headache, bum knee, fibromyalgia, etc. I stood in line to tell my story, but it seemed most said that they had felt a sensation come over them when Apostle David cast the illnesses out. I did not feel any sensation and I didn't want to ruin the atmosphere, so I walked back to my seat with Vida. As the professions continued, I started to hear others say they didn't feel some spiritual sensation either. It was also interesting that four people had come up and said cancer was their ailment.

It was getting close to the end of the line in front of the stage and the gentleman from the church we met when we first walked put his arm around me and asked if I was going to go up. I expressed my concern and he said it would be fine. I proceeded back to the front.

When it was my turn, I walked up onto the stage and explained to Kathleen about the cancer I have. I also whispered that we know someone in common – Jessie. She smiled and nodded that she knew who I was referring to. I then proceeded up to Apostle David. We discussed the cancer, the radiation and chemotherapy treatments and the lymph node that had to be removed. Apostle David also pointed out that I was the fifth cancer patient there that night. He assured me that the lymph node was removed and that there would be no cancer. He also emphasized that I confirm this with the doctors. Apostle David asked me to raise my hands while he said a special prayer for me. I learned later that the entire congregation stood and raised their hands with me, joining into the prayer on my behalf.

I thanked him, then we hugged and I started back to my seat. Before I made it back, he asked Vida and I to both come up. Apostle David commented on Vida's “flowing white hair,” and how much he liked it and she and I walked up the stage. The three of us held hands and Apostle David said God had instructed him to say a prayer for her since she was my caregiver throughout my journey with cancer. He said that was a big responsibility and that she needed the assurance that God is watching over her too.

So, jumping back to October 28, we can only believe that a miracle took place. The doctor told Vida he could not find the lymph node in question and Vida told the doctor she had a feeling something like that would happen. He asked why she felt that way. “Prayer?” he asked. Vida affirmed the question.

Now we are just waiting on the results of the biopsy that was taken from the floor of my mouth. These results will be in next week.

Miracles: How do we explain them or should we even try?

On returning to work

Bruce G Larson

I have been on medical leave through the Family Medical Leave Act since March, 2014. This time has been unpaid since I did not have short or long term disability insurance. That was a mistake. I figured I made it this long without medical problems that involved months of treatment and rehabilitation, so why would I need it now? The fact that I am growing older, of course, never figured into the arguments. It will, next time we can make changes.

I have mixed feelings about returning to work. First, I am eager to work. We need the money and have I never been off of work for this long and, frankly, it is driving me a bit crazy. The routine of work is comforting to me. I like the people I work with and I like what I do.

The job I have is a very challenging one. I sell replacement parts for commercial cooking, preparation and refrigeration equipment. Basically, I sell parts for ovens and refrigerators. The competition is tough. All the competitors want the business we have and we want the business the competition has. That's the way it normally works. I know almost everyone in the business here so being a ruthless salesman is not an approach I can take. Besides, it is not in my character to do.

My customers include commercial repair services companies, various distributors and hospitality. I am most heavily involved with the area hotels and resorts. Orlando is second only to Las Vegas in the number hotels we have and it would be safe to say we do business will most of the major players in the industry.

Communicating with my customers is paramount to the job. I was concerned that maybe my customers would not like doing business with me because I might be slightly disfigured in the area of my mouth and neck or because I do not speak the same as I used to prior to the surgeries and treatment. However, after talking about that issue with my doctor, I realized I was cutting my customers short. He said that cancer affects almost everyone in one way or another and that they will admire the courage I had to beat this cancer and the courage it takes to come back and continue on with my life.

I had remained in contact with some of my customers and they confirmed the doctor's belief. He deals with this in various degrees all day every day. Here are some of the comments I received from customers:

Do not worry, God is in control. I will be praying for you...

Come on by, we’ll buy stuff from you; anything to help you keep your job and also help you along. I sense the positive good optimistic spirit in your letter and that is good…you are a fighter.

Bruce, I truly hope that everything gets back on track for you. You just never know what life is going to throw at you but I know you are a survivor and you will come through this stronger than you have ever been. Please know that you are in my thoughts and I wish you the best. Stay in touch.

We will keep the faith my friend. Like I tell my children: When times are troubled, don't look down. There are no answers down there. Instead, always look up where there is always hope for a brighter tomorrow.

We know that your journey is going to be rough but for some reason I feel optimistic for you. Stay strong and we’ll pray and wish you well, if enough people do it - it has to have a positive result.

Well I definitely do care and will keep you in my prayers. As we have talked about, it is all for a reason. God is a good God! just remember "don't tell God you got a big problem, tell your problem you have a BIG GOD!" 

I felt much better about the return to work when I looked at everything from the standpoint of the doctors and the customers. I have certain limitations as far as speaking but that has not prevented me from doing what I have needed to do. I also still cannot eat without the aid of the PEG-tube.

I found myself taking a good look at Roger Ebert, the acclaimed film critic from Chicago

Roger Ebert maintained a thumbs-up attitude (photo credits unknown)

who lost his battle against thyroid and salivary gland cancer. I had mentioned the admiration I have for Roger Ebert in a previous post and the manner in which he accepted his appearance after his series of surgeries. He maintained a style and grace with his deformed face that many would not have been able to do. It also touched home not only because there were certain similarities with our situations but also because my father new him when they both worked at the Chicago Sun-Times.

On his personal blog, Ebert explained that he was no longer able to eat, drink or speak anymore. A reader told him that it must be sad to be in that position. Ebert responded: "Not so much really. Not anymore." 

Ebert went on to explain his condition and subsequent surgeries in his book "Life Itself": 
"The new reality took shape slowly. Understand that I was never told that after surgery I might lose the ability to eat, drink and speak. Eating and drinking were not mentioned, and it was said that after the first surgery I might be able to go back to work on television. Success in such surgery is not unheard of. It didn't happen that way. The second surgery was also intended to restore my speaking ability. It seemed to help together for awhile, but then, in surgeon-speak, also 'fell apart.' In both cases the idea was to rebuild my face with bone and flesh transplants from my legs to restore an acceptable appearance. Both surgeries failed because microsurgery to reattach blood vessels broke down."

In some ways, it is frightening to read Ebert's story. I was haunted by images of him and others prior to my first surgery. In another way, I almost felt like I would have been in good company if I had been able to have the same "thumbs-up" attitude he demonstrated. Sadly, Ebert lost his battle against cancer on April 4, 2013.

I look forward to returning to work. I want people to know that we can win our battles against cancer and we can go on with our lives, even if we are a little bit different from when we first climbed on to our roller coaster ride with cancer.

What can I expect from my surgery on Oct 28

Apostle David E. Taylor Revival

On October 28, one day after my 61st birthday, I go in for surgery again at Florida Hospital Celebration.

I had a CT Scan in August to determine the effectiveness of the last few months of radiation and chemotherapy. The medical oncologist's office thought, for the most part, that it was a clean bill of health as related to cancer. They had a concern, however, about a lymph node that had grown in size since the scan prior to the treatment.

When we met with the head and neck surgeon a couple of weeks ago, he decided, after reviewing the report from the scan, that the lymph node needs to be removed. He also thought I may need chemotherapy following the surgical procedure. While that is being done, they will also remove two nodules from the previous surgery and take a biopsy on my gums.

There is lingering pain in my gums and the radiation oncologist referred me to a pain specialist when it was determined the pain was not in control. That was still not effective.

It is our hope, as you can imagine, that there will no more cancer found. To help enforce that hope, we attended a revival when David E. Taylor was in town last week. He had said during the introduction to his evening of healing that there were 5 people with cancer in the building.

The first thing we had noticed was that each and every person in the building was extremely nice and made us feel comfortable and right at home. In many ways, sadly, we felt more welcome there than in our own church.

I cannot do justice by trying to explain the energy in that sanctuary that night. There were several people who had other ailments like arthritis, back pain and migraine headaches among others. During a very enthusiastic and eerily spiritual process, he vigorously declared that he had cast out each of the sicknesses each person had.

Afterward, he asked that each person that had an ailment come to the alter and explain their condition and what they felt when those ailments were cast out from them. I stood in line waiting to tell my story, but returned to my seat when I heard people say they felt a sensation come over them when the ailment left. I did not feel anything so I didn't want to be responsible for losing the momentum that was very much present.

A member of the church that we had been talking before the revival started found me and asked if I was going up to the stage since we discussed my cancer. I explained my concern and he said that was ok, to just say what I felt, even if it was nothing.

I returned to the line leading up to the stage and heard one or two others indicate that they "really didn't feel anything" either. I was the last to share my story and I told everyone about the cancer, where it was and what was going on with me now. He assured me the cancer was removed from my body but he also made it clear that I need to continue with all the medical procedures I was involved with. He did ask, however, that when the doctor reveals that I am cancer free, I tell the doctor what happened to me at the revival.

 I later learned that while I was on the stage and Apostle David had asked me to raise my hands in praise, that the entire audience stood up and raised their hands for me and with me.

So here it is, less than a week before the surgery, and while I am hopeful that the cancer is gone, a part of me says wait and see. I want to believe that Apostle David, as he is referred to, accomplished all that he said he did. I have no reason to doubt what was claimed, except for the practical side of me. But then, miracles generally seem to defy practicality.

Soon we will know the entire story. We will know if the cancer is gone. And what if it is, how will we explain it? Was it a miracle? Was it medicine? But then, does it really matter?

Caregivers - riding the roller coaster with the patients

Let's face it, cancer is a family affair. While only one in the family may be afflicted, most of the immediate family becomes intimately involved. And within that group, there is usually a specific person designated as the “caregiver,” the one who watches and monitors all the daily activities of the patient.

These responsibilities include the administration of medications, the changing of wound dressings and visiting the the doctors with the patient, to name only a few.

Often, the caregiver has a better grasp of what the patient needs than the patient. This makes sense because the patient may be on several medications, is faced with fatigue and simply has a lot on his or her mind. Further, in my case, I was really "out of it" for several days after my initial surgery, so Vida, my caregiver, had to stay informed on what was going on. She also made the necessary preparations prior to my release for my homecoming which involved making sure the proper equipment was in place, like the oxygen tanks, the suction machine and the nebulizer.

I was also unable to drive for several months after the surgery and had to go to the hospital for 7 ½ weeks of radiation and chemotherapy treatments. In addition to these, periodic doctor and therapist appointments were constantly required.

From the day I went home in March, Vida has kept daily records of every medication I take throughout the day, the time they were taken and the dosage. Often, this was needed when we went back to the doctor for a medication review. We easily knew what was taken and how many of each. The doctor was then able to determine what changes may have been required. The records were also used once when we were told to call for an ambulance due to a reaction I was having. The paramedics needed to know precisely what I had been taking.

We had a visiting nurse when I got home in March as well. She would take my vitals, check on the wounds from surgery and report back to the doctors on anything unusual. Insurance cut her off after a few visits, so she spent time showing Vida how to change the dressings and went over the supplies we would have everything we needed.

Caregivers also give emotional support. The title of this blog is the cancer roller coaster and the caregiver follows the same ups and downs as the patient. But since they were not on medications, recovering from surgery or undergoing serious treatments, the caregiver tries to stabilize emotions of the patient and when he or she is feeling down, they will try to build me back up. Likewise, they jump at the opportunity to celebrate the triumphs as well.

A positive attitude is one of the key components for a successful recovery, so even if Vida was down, she would have to do her best explain all the good that is happening despite any brief dips. And she demonstrated her care for me by doing just that.

Cancer is a difficult disease to deal with. As much as the patient may try not to think in that direction, the possibility of death comes into sight, even if the cancer was not considered terminal. The caregiver knows this, and Vida knew this. Every time the roller coaster takes a dip down, a certain fear factor sets in. The patient and the caregiver need to come to terms with this and support one another. There isn't any choice but to make the most of any situation that comes along. That's simply what we have to do.

ChooseHope.com offers a framed caregivers poem that I got for Vida as a gift. The poem reads:

Thank you for standing by me and lending an ear.
For helping me out by just being near.

Thank you for cheering me on or saying a prayer.
For holding me up and showing you care.

Thank you for making me laugh and giving me hope.
For showing support and helping me cope.

Thank you for all that you've done and all that you'll do.
I am so very fortunate to have someone like you!

Written by: Linda Nielsen- Choose Hope, Inc. Copyright 2000

How well does the medical staff communicate with the patient?

I mentioned in an earlier post that I first noticed the lump in my jaw in November, 2013. I have seen thirteen doctors and therapists since that time:

Family Doctor
Medical Oncologist
Radiation Oncologist
Otolarygologist
   1 - dissection
   1 - reconstruction
Pain Specialist
Proctologist
General Surgeon - Power Port
Ear, Nose, Throat Specialist
Speech and Swallow Therapist
Gastroenterologist
Pulmonary Specialist

Selfie:Waiting in the emergency room

I appreciate and respect the specialty each one has chosen. As with any group of individuals, there were some I liked better than others. But each had their own task to do and some tasks overlapped each other and that I understood.

The problem, however, is that there seemed to be very little communication between the doctors regarding my treatment. Often, doctors would disagree with each other and I was left to decide who to listen to. As a patient under professional medical care, it was awkward to hear one doctor recommend one medication only to have another tell me not to take that and to take another
instead.

We have all heard second opinions matter, but I don't see this as a matter of a second opinion; I see it as differing opinions falling under the same blanket of professionals. In other words, it was not a case of two doctors with the same specialty offering different approaches, it is two doctors with different specialties, assigned to help me within their own specialty, offering opposing viewpoints.

I was also recently told by an "old school" nurse who has been around a long time (her words, not mine!) that doctors may not share all the information you may need. Often, they will wait to see what the patient asks then answers those questions but none other. She suggested that whenever I go to see a doctor, prepare a list beforehand and bring that so those questions can be asked. It's a good idea, too, because I found myself forgetting certain questions only to remember them on the way home.

I have seen a commercial on TV for a cancer-specific healthcare facility with locations in various parts of the country. In the commercial, the group of doctors and specialists assigned to a patient gathered around a conference room table discussing treatment plans. That, to me, sounds like the right way to approach this problem with the best interests of the patient in mind.

And the fact that these doctors and specialists are in different buildings or areas of the city should not matter. Technology has that problem solved. If a 6 year-old boy can talk "face-to-face" with his 85 year-old grandfather from different parts of the country on the computer, certainly a handful of doctors can do the same.

The roller coaster heads downward again

Thanks Amy for this great poster

If you were not able to understand the concept of the roller coaster ride, here is an example.

About three weeks ago, I got the results back from my most recent CT Scan. For the most part it was great news. There was some concern about a lymph node that had grown in size since the last scan. There did not seem to be much concern, so we considered it a good report - an upward swing.

Last week, I had a scheduled appointment with my original surgeon. I was asked to bring a copy of the CT Scan report so he could review it himself. He checked my surgical scars, reviewed the scan and checked inside my mouth where I was still having considerable pain.

It was determined that I needed additional surgery. They wanted to removed the enlarged lymph node, remove two nodules from the original surgery and take a biopsy of the gums and inner lip to see why there is lingering pain.

My surgery is scheduled for October 28. Fortunately, I can go home the same day, but the surgeon said there may be another round of chemotherapy after the surgery is completed.

Thus, the roller coaster. Just when we think we are riding high and headed toward the road to recovery, we are dealt another downward spin. We get used to it, sort of. It is always our hope, of course, to just get better and put it all behind us - never giving up. The disease, however, has a plan of its own.

Prescription medications

There aren't too many procedures performed at a hospital that don't require at least some kind of medication before, during and/or after the procedure.

With my cancer (malignant neoplasm, floor of mouth), extensive dissection and reconstruction of my mouth was required during the 8 hour procedure. Parts were harvested from my arm and leg to help with the reconstruction. A tracestomy and PEG Tube were implanted, all of my lower teeth were removed, part of my tongue was cut off and replaced with part of my arm and leg and the cancer tumors had to be removed. Mouth pain is something that has always been a 'sore' area for me.

While I was in the hospital, I was on morphine, although I don't know how much or how often. What I do know is that pain was seemingly well-controlled. I also remember, however, that there was a lot I did not remember.

Then, seven days after surgery, I was released and was given two pints of liquid Hyrdrocodone (I had the PEG-Tube and was unable to use my mouth for any purpose).

Throughout the course of the recovery, I was prescribed many drugs. Some were for various, basic maintenance but others were narcotic pain relievers. These included:

• Hydromorphone
• Oxycodone
• Tramadol
• Fentanyl (patch)
• Gabapentin

We had to keep track of all medications taken throughout the day to make sure they were taken and also to make sure I did not take any over the prescribed dosage.

When the medical team was having difficulty determining why pain was still an issue, one suggested that I might have to find a pain level I am comfortable living with. That did not sound too promising.

Sometime I would take over-the-counter pain relievers to supplement what was prescribed, but I had to be careful since all of those come with precautions such as the possibility of liver or stomach damage.

I began to watch closely the efforts of John Morgan and the United for Care, People United for Medical Marijuana, campaign.

According to the United for Care website, there were two reasons why Morgan
supports this measure:

"The two reasons behind his vocal support of the medical marijuana legalization effort in Florida, he says, started when he saw how medical cannabis helped his father, who had been diagnosed with emphysema and esophageal cancer, relive his pain.

The second reason, according to Morgan, stems from the damage he’s seen caused by the high-powered prescription pain medications his clients are often given by a doctor following an injury.

Also, 'as a personal injury attorney,' Morgan said, 'I’ve seen people in pain who end up on oxycodone. And 16,000 people die from that every year. It’s highly addictive.'”

Honestly, I cannot say if prescribed medical marijuana would have been beneficial to me in controlling pain. I was never given the chance. But I do see the support comes from some very prominent and influential people in Florida.

I will continue to watch this campaign very closely. The State of Florida has the "Constitutional Amendment X, Section 29 Use of Marijuana for Certain Medical Conditions" on the November 4 ballot.

Again, I am not sure if medical marijuana would have helped me nor do I know if my condition would have qualified me for a medical marijuana prescription, but based on the difficulty the doctors are having controlling my pain, I remain open to any alternatives.

Jake lost his battle against cancer

The journey we take with cancer can sometimes take a fatal turn on us. I had a cancer battle buddy named Jake. He had bone and brain cancer. I admired his courage through all of the tough times and I highly respect his wife, for being there following the course with him. She was at every turn, supporting him, encouraging him, praying with him.

Jake passed away one Sunday morning in September. He was younger than me and we both had different types of cancer. We rode a teeter totter together, it appeared. With cancer, there are highs and lows in physical, emotional and spiritual conditions. And it seemed like when he was on the high side of the teeter totter I was on the low side. We alternated for several months, up and down, back and forth.

Two weeks before he passed, Jake was at a low and some thought he could not tolerate a new treatment plan they proposed that could possibly pull him out of it. But he was stubborn, actually, it was more like he was determined, and he wanted to make the new plan work. Jake fought hard for his right to live. He exercised, he went through rigorous physical therapy and he tried to surpass that which was expected of him. But it was not enough.

The cancer was too powerful, it consumed his body, but not his soul. The doctors felt that hospice care would be best for him and his wife. So they checked into the hospice care facility and waited for Jesus to take him home. Again, he was not going to go without a fight.

He was constantly surrounded by family, friends, co-workers, neighbors, fellow church members. He waited and we waited. Perhaps he wanted to make sure that his house was in order first. Not his heavenly house, but the house he would leave behind to his wife. It seems he wanted to make sure she was cared for in all the right ways.

On Sunday morning, he passed into the arms of Jesus. He will be missed but we will never forget him and how he walked with me in my own journey with cancer. He did what he could for himself, but he always asked his wife how I was doing and where I was with my treatment.

He cared for us. And we cared for him. One day last week in hospice, I took his hand and said "Thank you for walking with me. I am still walking with you." He squeezed my hand in acknowledgment with the only gentle force he was capable of.

He sang in the church choir, and a fellow choir member noted that at about the time of his passing,"we were just singing ‘my chains are gone, I’ve been set free.’”

Rest easy, my friend. You are in good hands and so is your loving wife.

If in doubt, check it out!

Cancer is a brutal disease. It does not care what plans you have for the future or how many other people will be affected by your cancer. It doesn't care what you may lose in the process of trying to stay alive. Cancer does what it wants to, when it wants to and its goal is to conquer your body; it wants to kill you.

One of our greatest defenses against cancer is early detection. The sooner we realize something might be wrong and needs to be checked out, the better. Waiting allows the cancer to multiply and spread. Like the game of Risk, cancer ruthlessly takes on any part of your body as quickly as possible. It's smart enough to know that planting its seed in as many areas of the body it can will help the cancer win the battle. Clearly, it wants you to lose.

Some of us, myself included, will think something is not right with our bodies and hold off getting it checked for fear it may be news we do not want to hear. But we wait knowing deep down that not checking it out only makes things worse.  We also know that not going to the doctor will not change the condition we are frightened of.

I had a lump in my jaw and was concerned about it, so I asked my family doctor to take a look at it when I was already there for a high blood pressure medicine review. The doctor glanced at it and suggested that we will keep an eye on it.

So here was a case where I wanted to find out what the lump was, but the doctor was not concerned. This is where I should have insisted the doctor take a closer look and at least tell me what the lump was. I didn't want to wait, the doctor did.

We need to clearly express our concerns to the doctors and if they are not responsive, ask them to have another doctor come in and look at it. If there is none, seek a second opinion. It is our body and our life at risk. I have no medical knowledge, but I believe it would be accurate to say that the waiting this doctor caused allowed the cancer to spread. It was 3 months later that the cancer was finally discovered.

You owe it to yourself and to your families:

If in doubt, check it out! Early detection saves lives...

Taking a look back; where it all started

Let's take a look at how this all started, at least from the time that I became

Bruce G Larson after initial surgery

suspicious something was not right.

It started with a lump in my jaw and I had pointed it out to my family doctor last fall, but they decided it was something they can just keep an eye on. As we inched into the new year, the lump had grown larger and I was beginning to experience pain in my jaw and under my tongue, especially when eating.

I went to the emergency room at a local hospital and their determination was that I had a salivary gland stone that could likely work itself out by using lemon drops. Two weeks later, the pain was increasing, sometimes unbearable, so I returned to the emergency room. They concluded, once again, that is was the salivary gland stone but suggested I see a specialist if things don’t start getting better.

A couple of weeks later, I saw a local ear, nose, throat specialist and they referred me to an otolaryngologist. They determined the growth had to be removed. They scheduled a surgical procedure and ordered some further tests at the hospital. Initially, the doctor was not overly concerned and said the surgical process, with recovery, would take about 3 days.

However, when the fine needle biopsy results were reviewed by the doctor, she called me to tell me the news. It was determined that I had cancer and the surgery would be more extensive than originally planned. Specifically, the cancer was termed malignant neoplasm, floor of mouth, Stage III. Reconstruction of my mouth would be required.

The surgery took over 8 hours at Florida Hospital, Celebration on March 11,

Florida Hospital, Celebration

2014 and that was followed by 3 days in ICU and 4 more days in a standard hospital room for observation.

I don’t recall much about what happened during the recovery process in the hospital. A lot of the time was spent just trying to figure things out. It was not clear what was next: the chemotherapy, radiation, the healing. The way I was feeling, I had many more questions than I did before. But I knew I had to somehow regain the faith I would need to overcome this disease.

On March 17, I was released from the hospital and taken home by ambulance.
I then spent a few weeks getting used to things at home. I have the Percutaneous endoscopic gastrostomy (PEG) tube inserted in the stomach for liquid nourishment and for taking medications.

A hospice nurse came twice a week at first then once a week until the insurance

What was taken became part of my tongue

company (not the doctors) released her. But she was able to show us how to change dressings, how to properly use the peg tube and also advised us of the medical supplies we would need. She also reviewed proper use of the oxygen tanks, the suction machine and the nebulizer.

There were problems sleeping too. I was not able to lay in my bed comfortably because the neck and throat were swollen and when I would lay flat, the air supply seemed to be limited. So I slept in a recliner since I was able to adjust the angle of my throat by positioning my back and head I was supposed to start chemotherapy and radiation treatment about 4 weeks after surgery, but I had been given an antibiotic for some reactions I was having in my mouth. These evidently caused lower intestinal bleeding and I was taken by ambulance back to the hospital.

While undergoing a series of tests, it was discovered that had contracted C-Diff , but that was cleared in a couple of days. I was, however, able to get a much needed colonoscopy while anesthetized. Thankfully, just one benign polyp was found and that was removed.

The following week, the radiation and chemotherapy had to start or I would be falling behind in the recommended treatments. Certainly, I had no idea what to expect, but I was prepared to lose my hair. I even bought a baseball cap that said “Cancer Sucks,” (just in case, of course).

The cancer, by that time, was upgraded to Stage IVa.

I was not able to sleep in my bed comfortably because the neck and throat were swollen and when I would lay flat, the air supply seemed to be limited. So I slept in a recliner since I was able to adjust the angle of my throat by positioning my back and head.

This issue almost caused another set-back to the treatment. The radiation therapy staff asked me to lie down on a table so they could fit the mask that I would have to wear for each treatment. They heat the plastic mask then form it to the contours of my face.

This mask would then be clamped to the treatment table to make sure once the coordinates were established, I would not be able to move.

I explained that I was unable to breathe while laying on my back, and the doctor

Bolted to the radiation therapy table

in charge told me that I would be able to breathe. I was frightened and was not sure what to do. I asked for a different doctor since I was not comfortable with him. He, in my opinion, would not work with me to solve this problem. I was assigned to the another doctor in that department and after meeting him, I felt much better. He provided me with a prescription for Xanax to help ease the anxiety.

I spent an afternoon laying on my back in the living room, extending the amount of time at comfortable intervals. Each radiation treatment required that remain laying down on my back for about 20 minutes.

Later, I met with the oncology social worker and she took the time to sit with me while the first Xanax dose was settling into my system. She went over breathing techniques and what to do if it felt like I could not breathe.

I can’t say that I fearlessly walked into the treatment room, but the staff greeted me with re-assurances that I would be ok and that if I felt something was going wrong, I needed to release the hand grips that pull my shoulders into place. They would notice this through the cameras in the treatment room and they would come to my aid in a matter of seconds. Remember, I remained clamped to the table and was not able to move. The table is also raised about 5 feet so the radiation machine could reach any angle necessary.

I still have this mask as a "souvenir"

My first complete radiation treatment took place on April 14 followed by my first day of chemotherapy on April 16. On April 17, I had a Bard Power Port surgically implanted in my upper chest. This allowed access for the chemotherapy treatments. The treatment plan called for 37 radiation treatments consisting of 16 fields each day and chemotherapy treatments once per week.

As the treatments continued, the process kept on getting easier and easier. There were some days that were more difficult than others. This was primarily due to an excessive mucus build-up that occurs from radiation. I always learned, however, that I would still be able to breathe despite this additional blockage. On May 22, I was pleased to learn that the radiation fields were reduced from 16 to 6.

It’s odd, but these treatments became a part of me. They provided a comfort zone. Maybe because so many things were going on, so many changes in my body and in my emotions, I felt safe going to the hospital. I would know what was going to happen, for the most part. I felt like these doctors, nurses, technicians were all rooting for me and I knew that they were – and still are.

After my initial shave 4 weeks following surgery (there were sutures under my jaw from ear to ear), I hardly had to shave again. The radiation did the shaving for me. I sometimes have to ask Vi now if I got all 7 remaining whiskers after I shave.

My final treatment, as I understood it, would fall somewhere around June 14. I was looking forward to this last day and the opportunity for me to ring the “Bell of Finality,” as some call it. It is a bell that the patient rings on his or her last day of radiation treatment. I had never seen it there at Florida Hospital, Altamonte, but knew it had to be there somewhere. Perhaps in an area further away from patients to keep from startling them.

Celebrating the final radiation treatment

But it was on June 3 that I learned the next day would be my final radiation treatment. While my calculations were wrong, I was not about to dispute the hospital, this time anyway.

So, on June 4, we set out for the last treatment then gathered the staff to ring the bell. My wife, Vida, wore nice black slacks with a dressy blouse. We were ready for this wonderful event to take place. This day was historic in my journey and I felt I had earned every bit of it and so did Vida.

After the treatment, and after the CLINAC radiation machine powered down, the

Vida visiting me in the hospital

staff came in to release me from the table. I was excited and they were excited right along with me. I was asked if I wanted to keep the mask but I had already made arrangements to take it home with me.

I was putting my shirt back on and asked where the bell was so we could take some pictures. They looked at each other and said they had heard that some hospitals have a bell-ringing ceremony, Florida Hospital Altamonte did not. The bell-ringing following the final radiation treatment is a ritual at some hospitals and radiation treatment centers use the celebrate the final day. It truly is a monumental event for those who have ever been 'exposed' to it.

But, since my hospital did not participate in this program, we created our own celebration at home. It was just as rewarding if not, more so, than the celebration at the hospital may have been.

Introduction

Vi and I were sitting on the patio today, listening to Z88.3 radio and enjoying the cooler October weather in Orlando, Florida.

We were able to look back at all that has happened since the beginning of the year. The fear, the sadness, the great confrontation with this disease called cancer. Vi has kept very good records of what has happened from documenting each medication taken and how much liquid food was taken with it, to the notes she had while waiting at Florida Hospital Celebration. 

We arrived at the hospital at about 5:00 am. Her notes followed from the time I went to the surgery staging area at about 6:00 to the time she kissed me goodbye before they wheeled me away. I was not sure what to expect and neither did Vi. For that matter, the surgeons were not sure until they actually started "dissecting." 

I had been haunted by visions of Roger Ebert after his string of surgeries. I also maintained the respect I had for him as he carried on with his normal life with his abnormal appearance. 

I recall when the surgeon came in prior to the surgery and Vi told him "We are trusting you, doctor." He replied with a simple "Thank you." He asked which leg I wanted bone taken from since they might have to remove part of the jaw. They would have then rebuilt it with the bone from my leg. Fortunately, I woke up to find that was not necessary. 

Vida's notes followed all the procedures as the nurses kept her informed throughout the 8 hour operation. The tracheostomy, the catheter, the PEG tube, the dissection of the oral cavity, the harvesting of skin and veins from the arm and leg. 

In some respects, I was the lucky one since I "slept" through all of this. But then, I was also the one that had to wake up with the results: no lower teeth, unable to talk, hardly able to move and in severe pain. 

This was March 11, 2014 and our journey with cancer had only just begun.