Hi there stranger, I'm glad to see you have returned! I feel like it has been far too long since my last blog post.
In an effort to get us all on the same page, allow me to recap where we are within this cancer saga...
On the 30th of January, I had a dentist look at a strange growth under my tongue. The dentist did not like what he saw, so he immediately referred me to an oral surgery clinic downtown. A biopsy of the growth was cut from my mouth that same day and sent away for testing at a pathology lab.
Over the following couple days, I battled immense pain from the biopsy site... to the point I had received nerve blocks in an effort to thwart the pain long enough for my tongue to heal.
On the 3rd of February, I was informed that the pathology report came back positive for Squamous Cell Carcinoma (SCC). The dentist set me up with a case manager, who assisted in scheduling my many appointments with multiple doctors.
Over the past eight weeks, I have been seeing an ENT surgeon, a radiation oncologist, and a clinical medicine doctor, all from Banner University Medical Center at the University of Arizona. After having received a CT scan, it has been determined that my cancer is in Stage III. I have multiple lymph nodes in my neck that have likely been impacted by the cancer. One node for sure has what looks like necrotic cancer tissue. The plan is... surgery followed by radiation and possibly chemo.
I have also been accepted into a clinical drug trial, which I had randomized into the control group, which means I will not receive the test medication IRX-2. Instead, I am on a 21 day study that requires one round of chemotherapy and five pills a day, for 21 days prior to my surgery. My surgery date is set for April 12th. This surgery will involve the removal of the tumor on the underside of my tongue and a neck bisection to remove all the lymph nodes in my neck.
So...
This has been one heck of a journey so far. The inquisitive side of me enjoys learning more about cancer and getting to participate in neat medical procedures, but my logical side has over analyzed my future possibilities to the point I have painted myself into a nightmare. This is where your idea of me being Mr. Optimistic comes to an end....
I was warned that the internet would do nothing for me but cause angst. My thirst for understanding what my future might hold has driven me to explore multiple cancer survivor, support forums and blogs. I am now well-versed in all there is to know about oral cancer, and let me tell you, it is not pretty. I have spent hours dwelling over what my future should look like, based on the many years of preparation I have endured. I have spent double that amount of time agonizing over what my future may look like now, knowing the cruel truth of what oral cancer survivors are faced with. I have allowed myself to become wrapped-up in what my quality of life may look like-post cancer, instead of simply being grateful for having life at all. Cancer has led me down a dark path.
This blog has meant a lot to me. Sharing my life with you has provided me an outlet to express the way I feel in a way I am comfortable. It also provided you a way to support me... even if it has been simply reading the blog. When I was having numerous appointments a week, I was doing well because the blog kept me distracted from the nasty truths about cancer. These last ten days since my last blog post have been torture. I can feel myself getting more and more anxious by the day. Sorrow, anger, and fear have replaced the optimism I had just a couple weeks ago. The closer I get to my surgery date, the worst I feel.
I've had enough resiliency training to know that I am heading in the wrong direction, and need some sort of intervention to get my head right. I made the decision to seek out help from a mental health specialist before things got too bad. I have a friend here at Davis-Monthan that works at the Mental Health Clinic on base, who helped setup an appointment for me, which I attended today. The doctor and I discussed the anxiety I have been feeling. He reassured me that my fears are warranted, and that I should not run away from them, but to address them in a healthy manner. The doc asked me if there were ever times I felt as peace when dealing with this cancer. I told him I feel best when spending one-on-one time with my wife and while writing this blog. He asked me a couple questions about the blog and why I felt it was helping me. I told him that I have never been one to feel comfortable opening up to people, especially when emotions are involved. He told me that my blog has provided me the outlet I need. I told him my only problem is not having enough medical appointments to write about. He encouraged me to write additional blogs, not related to specific medical appointments, but more directed towards the way I am feeling on that particular day. The doctor helped me see that this journey I am on is more than just a series of medical appointments and procedures.
Before letting me go, the doc and I practiced some breathing techniques that can help reduce stress and prevent the build-up of anxiety. He offered to schedule a second visit, but I'm not sure I will need it. I have a support system, I just need to use it more often. I need to stick with what works, even if that means writing blogs about nothing. Its not necessarily the words that help me cope, but the connection the words create between me and you that helps me see past the negativity cancer breeds.
So...
For the sake of my mental health, be prepared to see more writings. Feel free to shoot me a topic to write about, because I may not have enough medical appointments to keep me busy.
And as always... Thank You!
Monday, March 27, 2017
Friday, March 17, 2017
Chemo, Pills, and Soup
Greetings! So, with San Diego behind us, it is time to refocus on destroying this cancer. I had three appointments Thursday morning: first with the phlebotomist, then with the ENT surgeon, and finally with the clinical drug coordinator.
Aside from my medical appointments, Jess and I had a lot going on that day. Jess needed to coordinate drop-offs and pick-ups for the kids, while I was still in the company of Randy, who flew out later that day. We decided to take two vehicles. Randy and I headed out first in order to make my 0740 appointment with the cancer clinic. This was the first time he got to see Tucson in the sunlight, so I enjoyed playing tour guide even it was just for a short while. I purposely drove the scenic route so that I could drive Randy next to the Air Force boneyard. This is where the Air Force stores thousands of airplanes that have been retired. If you have never seen the boneyard in person, it is well worth the trip if you ever find yourself in the Tucson area.
We arrived at the cancer clinic with 20 minutes to spare. I signed in at the front desk where they then handed me a pager. I recommended to Randy we head down to the cafe for some coffee. On our way, we past by the pharmacy where Randy took notice that they sold Aloe Vera gel... something he had be desiring since he had burned while we were in San Diego. I guess his northwestern, pasty white skin couldn't handle the killer rays of SD.
My pager activated jut as I had payed for my coffee. I looked back at Randy who had not yet purchased anything. Holing up the pager for him to see, I said, "you're welcome," and I walked away. I made my way toward the lab, where I could see a female standing outside the entrance door waiting for me-she was going to be my vampire for the day. I was taken back and seated in one of the phlebotomy chairs that have the padded, swiveling tray designed to catch you if you pass out. I tried to engage the phlebotomist, using my typical peppy charm, but I don't think she had her morning coffee yet. I had four vacutainers of blood taken, which has been about the standard number lately. The technician was able to locate and hit a vein relatively quickly. As usual, I am always a good helper... ready to old vacutainers, apply pressure, or hand out equipment as I see needed. She released the death grip band from around my arm and excused me for the lab. The entire process only lasted a couple minutes. It wasn't a bad experience, but it wasn't overly pleasant either. Strictly business...
Walking back into the waiting room, I found Randy sitting in a chair just taking in his surroundings. He made a comment to me on how young I appear compared to many of the other patients. He shared with me a story about his old man, who has since passed on after a bout with cancer himself. Randy and I moved to a couch that was positioned where we could better observe the people walking in and out of the cancer clinic. People watching was one of our favorite activities when we were young.
The pharmacy inside the clinic opened up at 0800. Randy was quick to buy his Aloe Vera gel. He returned to the couch already applying this clear goop all over his face. We made a couple jokes, we laughed, and as usual, caused a scene as people looked our way to see what the commotion was about. Some things will never change.
My pager activated again. It was time to meet-up with the ENT surgeon, who I had not seen in a little over two weeks. A nurse met me at the door and led me to an exam room, where she obtained a set of vitals. She was more pleasant than the phlebotomist... she must have had her coffee. I gained some weight since my last visit, which would be expected after eating out multiple times a day over the last week or so. The way I look at it... I'm about to go on a liquid diet for awhile and may loose some of my ability to taste food. I should indulge and enjoy food as much as possible now because I may miss it later.
My ENT surgeon walked in with her typical team of assistants. One of the gals immediately jumped on a computer and began typing away... as if she was a court reporter taking down every work spoken. The other assistant had a note pad and appeared to be looking over some information. Also in the group was the clinical trial coordinator and Jessica. Jess arrived just in time, which I consider a blessing since she always takes good notes for me.
The ENT surgeon immediately asked me if I had been told how I had randomized within the clinical drug trial. I replied with a, "No." I was informed that I randomized as one of "non-participants" of the IRX-2 drug injections. I will still receive the oral medications and the initial dose of chemo, but I will not get the actual test drug. I was a bit bummed out. I had convinced myself that I was going to receive this potentially awesome drug that would prevent me from having a cancer relapse down the road. I was ensured that my participation is still critical to the clinical trial. I agreed, and promised to do what I had signed up to do.
The ENT surgeon began looking me over. She checked all the usual spots, trying to determine if there were any changes since the last visit. She was concerned that she could not feel the enlarged lymph nodes in my neck. The were certainly there because they showed up clearly on the CT scan, but must be hidden behind my muscle tissue. She commented that most patients are much older than me, so getting to the lymph nodes may prove to be a little more difficult than usual. She was very honest, telling me that this would not be an easy recovery. I had a lot of mass (muscle) to work through, which can prolong the recovery process. I asked her questions about known side effects such as limited saliva production and taste. She confirmed that both could be lessened, but doubts either would be completely lost. I took this as good news. The ENT surgeon again confirmed the need for radiation as well as chemo to be on the safe side. She told us that the involvement of the lymph nodes changed the entire game.
After we confirmed surgery dates and pre-op appointments, the ENT surgeon and her team left. Jess and I were left talking to the clinical trial coordinator. We were told that I would need to head upstairs to begin my first chemo treatment. She also informed us that she would bring me all the medications I would need to fulfill the 21 day drug trial obligations.
Jess and I headed upstairs towards the chemotherapy clinic. As we approached the front desk, there he was... Randy. He had taken it upon himself to cruise around the cancer clinic, scooping the place out. I was not at all surprised. Randy then joined Jessica and I as we waited to be called back. It didn't take too long before my clinical trial coordinator found us upstairs and escorted me to where I would be receiving my first dose of chemo.
The chemo treatment room was designed for patients that were only receiving an few rounds of treatment. There were hospital-like rooms within the clinic where some patients had been staying for multiple day long treatments. There were four treatment chairs-one in each corner of a large room. There were also multiple visitation chairs, two of which Jessica and Randy occupied. The room was ridiculously cold. I don't know if it was done on purpose, but it felt like it could snow under the right circumstances.
The technician that assisted me was extremely nice. He was large guy... not fat, beefy. He talked slow, with a Russian sounding accent. The technician wrapped my arms in a blanket with heating packs. He said it would help open my blood vessels. I assumed they were going to use a large gauge needle, which always hurt more.
We had to wait around for a bit before the technician inserted my IV catheter and port. In the meantime, Randy and I filled my wife in on some of the adventures we had while in San Diego. We threw in a couple inside jokes, which we laughed at, but were obviously over my wife's head. She was convinced that we (Randy and I) were meant to be together.
The drug trial coordinator stopped in to deliver my oral medications and the log I was expected to fill out three times a day. I didn't realize I had homework to do... She also dropped by the prescriptions for the other four medications I was receiving that day. If my math suits me well...I am not up to eight pills and two mouth rinses. I joked about needing one of those pill holders old people use to keep track of the days of the week. The coordinator gal was quick to let us know they sold them downstairs, which Jess then quickly offered to go buy one. Being the man I am... I immediately dismissed the idea, confident I could keep track of the pills myself. I also made a joke that its a good thing I'm taking so many pills since some of them need to be taken with a meal. I'll be taking so many pills that it will be like killing two birds with one stone.
I eventually got hooked up with the chemo medicine. I don't know why, but I thought the chemo was going to hurt or burn. It didn't hurt at all! I was told I might feel some nausea, but even that didn't seem to happen. Maybe my youthful age is a benefit!
It took thirty minutes to go through the entire bag of medicine. During that time, we were accompanied by another gentleman and his wife. He was 81 years old and had advanced stage four cancer throughout his body. I was again amazed at the resiliency of the human spirit. He appeared at peace with his disease. He sat there like a champ, chatting with his wife and bragging that he had not felt nauseated in quit some time. He obviously had been here before because he knew to ask for soups and other snacks. When he asked what soups they had available, I looked a Randy and said, "The soup of the day." He replied with, "Mmmm.... that sounds good. I'll take that." If you didn't know... this is a joke from Dumb and Dumber. Anything to get a laugh.
Jess had ran downstairs to request my prescription be filled at the onsite pharmacy. It was nice because we were able to pick up my meds immediately following the chemo treatment. When we arrived to the pharmacy, I provided my name and birth date to the ladies behind the counter. It didn't take long to retrieve my items, but it was long enough for a prankster to get one last joke in before we left. After the lady had delivered my meds, she asked if I wanted to purchase "that" as she pointed at a box sitting in front of me. It was an at-home enema kit. I immediately turn around to Randy laughing uncontrollably and my wife smirking. I didn't buy the enema kit, but I did get a shopping bag full of medications.
We then left the cancer clinic. I was now equipped with an assortment of pills, each one having a purpose. I could name them off to you, but I wouldn't know what each of them do. Some are to help boost my immune system while others help fight off nausea.
The appointments took much longer than I had anticipated, so I didn't have as much time to play tour guise as I would have hoped. I took Randy to lunch and then cruised through the UofA campus before heading towards the airport. It sure was nice getting to see him. Spending time with his brought back many memories. Our time together was just long enough to establish some new memories that I have no doubt will bring much laughter sometime down the road.
Aside from my medical appointments, Jess and I had a lot going on that day. Jess needed to coordinate drop-offs and pick-ups for the kids, while I was still in the company of Randy, who flew out later that day. We decided to take two vehicles. Randy and I headed out first in order to make my 0740 appointment with the cancer clinic. This was the first time he got to see Tucson in the sunlight, so I enjoyed playing tour guide even it was just for a short while. I purposely drove the scenic route so that I could drive Randy next to the Air Force boneyard. This is where the Air Force stores thousands of airplanes that have been retired. If you have never seen the boneyard in person, it is well worth the trip if you ever find yourself in the Tucson area.
We arrived at the cancer clinic with 20 minutes to spare. I signed in at the front desk where they then handed me a pager. I recommended to Randy we head down to the cafe for some coffee. On our way, we past by the pharmacy where Randy took notice that they sold Aloe Vera gel... something he had be desiring since he had burned while we were in San Diego. I guess his northwestern, pasty white skin couldn't handle the killer rays of SD.
My pager activated jut as I had payed for my coffee. I looked back at Randy who had not yet purchased anything. Holing up the pager for him to see, I said, "you're welcome," and I walked away. I made my way toward the lab, where I could see a female standing outside the entrance door waiting for me-she was going to be my vampire for the day. I was taken back and seated in one of the phlebotomy chairs that have the padded, swiveling tray designed to catch you if you pass out. I tried to engage the phlebotomist, using my typical peppy charm, but I don't think she had her morning coffee yet. I had four vacutainers of blood taken, which has been about the standard number lately. The technician was able to locate and hit a vein relatively quickly. As usual, I am always a good helper... ready to old vacutainers, apply pressure, or hand out equipment as I see needed. She released the death grip band from around my arm and excused me for the lab. The entire process only lasted a couple minutes. It wasn't a bad experience, but it wasn't overly pleasant either. Strictly business...
Walking back into the waiting room, I found Randy sitting in a chair just taking in his surroundings. He made a comment to me on how young I appear compared to many of the other patients. He shared with me a story about his old man, who has since passed on after a bout with cancer himself. Randy and I moved to a couch that was positioned where we could better observe the people walking in and out of the cancer clinic. People watching was one of our favorite activities when we were young.
The pharmacy inside the clinic opened up at 0800. Randy was quick to buy his Aloe Vera gel. He returned to the couch already applying this clear goop all over his face. We made a couple jokes, we laughed, and as usual, caused a scene as people looked our way to see what the commotion was about. Some things will never change.
My pager activated again. It was time to meet-up with the ENT surgeon, who I had not seen in a little over two weeks. A nurse met me at the door and led me to an exam room, where she obtained a set of vitals. She was more pleasant than the phlebotomist... she must have had her coffee. I gained some weight since my last visit, which would be expected after eating out multiple times a day over the last week or so. The way I look at it... I'm about to go on a liquid diet for awhile and may loose some of my ability to taste food. I should indulge and enjoy food as much as possible now because I may miss it later.
My ENT surgeon walked in with her typical team of assistants. One of the gals immediately jumped on a computer and began typing away... as if she was a court reporter taking down every work spoken. The other assistant had a note pad and appeared to be looking over some information. Also in the group was the clinical trial coordinator and Jessica. Jess arrived just in time, which I consider a blessing since she always takes good notes for me.
The ENT surgeon immediately asked me if I had been told how I had randomized within the clinical drug trial. I replied with a, "No." I was informed that I randomized as one of "non-participants" of the IRX-2 drug injections. I will still receive the oral medications and the initial dose of chemo, but I will not get the actual test drug. I was a bit bummed out. I had convinced myself that I was going to receive this potentially awesome drug that would prevent me from having a cancer relapse down the road. I was ensured that my participation is still critical to the clinical trial. I agreed, and promised to do what I had signed up to do.
The ENT surgeon began looking me over. She checked all the usual spots, trying to determine if there were any changes since the last visit. She was concerned that she could not feel the enlarged lymph nodes in my neck. The were certainly there because they showed up clearly on the CT scan, but must be hidden behind my muscle tissue. She commented that most patients are much older than me, so getting to the lymph nodes may prove to be a little more difficult than usual. She was very honest, telling me that this would not be an easy recovery. I had a lot of mass (muscle) to work through, which can prolong the recovery process. I asked her questions about known side effects such as limited saliva production and taste. She confirmed that both could be lessened, but doubts either would be completely lost. I took this as good news. The ENT surgeon again confirmed the need for radiation as well as chemo to be on the safe side. She told us that the involvement of the lymph nodes changed the entire game.
After we confirmed surgery dates and pre-op appointments, the ENT surgeon and her team left. Jess and I were left talking to the clinical trial coordinator. We were told that I would need to head upstairs to begin my first chemo treatment. She also informed us that she would bring me all the medications I would need to fulfill the 21 day drug trial obligations.
Jess and I headed upstairs towards the chemotherapy clinic. As we approached the front desk, there he was... Randy. He had taken it upon himself to cruise around the cancer clinic, scooping the place out. I was not at all surprised. Randy then joined Jessica and I as we waited to be called back. It didn't take too long before my clinical trial coordinator found us upstairs and escorted me to where I would be receiving my first dose of chemo.
The chemo treatment room was designed for patients that were only receiving an few rounds of treatment. There were hospital-like rooms within the clinic where some patients had been staying for multiple day long treatments. There were four treatment chairs-one in each corner of a large room. There were also multiple visitation chairs, two of which Jessica and Randy occupied. The room was ridiculously cold. I don't know if it was done on purpose, but it felt like it could snow under the right circumstances.
The technician that assisted me was extremely nice. He was large guy... not fat, beefy. He talked slow, with a Russian sounding accent. The technician wrapped my arms in a blanket with heating packs. He said it would help open my blood vessels. I assumed they were going to use a large gauge needle, which always hurt more.
We had to wait around for a bit before the technician inserted my IV catheter and port. In the meantime, Randy and I filled my wife in on some of the adventures we had while in San Diego. We threw in a couple inside jokes, which we laughed at, but were obviously over my wife's head. She was convinced that we (Randy and I) were meant to be together.
The drug trial coordinator stopped in to deliver my oral medications and the log I was expected to fill out three times a day. I didn't realize I had homework to do... She also dropped by the prescriptions for the other four medications I was receiving that day. If my math suits me well...I am not up to eight pills and two mouth rinses. I joked about needing one of those pill holders old people use to keep track of the days of the week. The coordinator gal was quick to let us know they sold them downstairs, which Jess then quickly offered to go buy one. Being the man I am... I immediately dismissed the idea, confident I could keep track of the pills myself. I also made a joke that its a good thing I'm taking so many pills since some of them need to be taken with a meal. I'll be taking so many pills that it will be like killing two birds with one stone.
I eventually got hooked up with the chemo medicine. I don't know why, but I thought the chemo was going to hurt or burn. It didn't hurt at all! I was told I might feel some nausea, but even that didn't seem to happen. Maybe my youthful age is a benefit!
It took thirty minutes to go through the entire bag of medicine. During that time, we were accompanied by another gentleman and his wife. He was 81 years old and had advanced stage four cancer throughout his body. I was again amazed at the resiliency of the human spirit. He appeared at peace with his disease. He sat there like a champ, chatting with his wife and bragging that he had not felt nauseated in quit some time. He obviously had been here before because he knew to ask for soups and other snacks. When he asked what soups they had available, I looked a Randy and said, "The soup of the day." He replied with, "Mmmm.... that sounds good. I'll take that." If you didn't know... this is a joke from Dumb and Dumber. Anything to get a laugh.
Jess had ran downstairs to request my prescription be filled at the onsite pharmacy. It was nice because we were able to pick up my meds immediately following the chemo treatment. When we arrived to the pharmacy, I provided my name and birth date to the ladies behind the counter. It didn't take long to retrieve my items, but it was long enough for a prankster to get one last joke in before we left. After the lady had delivered my meds, she asked if I wanted to purchase "that" as she pointed at a box sitting in front of me. It was an at-home enema kit. I immediately turn around to Randy laughing uncontrollably and my wife smirking. I didn't buy the enema kit, but I did get a shopping bag full of medications.
We then left the cancer clinic. I was now equipped with an assortment of pills, each one having a purpose. I could name them off to you, but I wouldn't know what each of them do. Some are to help boost my immune system while others help fight off nausea.
The appointments took much longer than I had anticipated, so I didn't have as much time to play tour guise as I would have hoped. I took Randy to lunch and then cruised through the UofA campus before heading towards the airport. It sure was nice getting to see him. Spending time with his brought back many memories. Our time together was just long enough to establish some new memories that I have no doubt will bring much laughter sometime down the road.
Thursday, March 16, 2017
Family is Forever.
Hello from sunny Arizona! I am both sad and glad to be home after my wonderful trip to San Diego. I am glad to see my wife and kids, but I am saddened to leave my San Diego family. The San Diego trip was full of both laughs and tears. Being in San Diego reminded me of some things I had either forgot, or had taken for granted. First, I was reminded of how great San Diego truly is. Now having gone back, I can not imagine trying to settle anywhere else. Next, I was reminded of the great friends I had left behind when I joined the Air Force. My best friend Randy threw a surprise party in my honor, which had been attended by many of the people I considered to be my closest friends. Finally, I was reminded that there are many people in my life pulling for me.... people I love and care for, yet failed to include in my life following my years in the Air Force.
As a lifelong member of the military community, I spent my entire life moving from one location to another. As a kid of a career Naval officer, I learned to adapt quickly to new surroundings so that I could meet people and make new friends. For most my life, I knew my relationships were temporary, which led me to also become good at forgetting people as a way to deal with my emotions. I've adapted the way I view and treat relationships to compliment my emotional needs. The only exception to my lifelong, protection policy was during a five year stint in San Diego.
When I was in the 8th grade, my family moved to a town within San Diego called Tierrasanta. This was the third San Diego location we resided inside of three years. My parents promised my sister and I this would be the last time we moved. To prove it, they bought a house... although I knew that didn't mean anything considering they had bought a home in the past, where I was again uprooted from after only a year. Tierrasanta is a hidden gem within San Diego. Not far from everything, it is a beautiful residential area nestled within a system of rolling hill and canyons. There are only a few way into the community, and unless you had business there, you wouldn't know it existed. It is the greatest town within the greatest city.
As a struggling teenager, I couldn't have hoped for a better place to live. Within my first few days of school, I met many kids I felt would make ideal candidates to be my new best friends. There were two kids in my P.E. class that took a liking to me: Chet and Risa. They knew each other from church and asked me if I would like to join them at one of their youth group events.
God had never been a huge figure in my life. I had been to church a couple times throughout my life, but religion was not a topic I recall hearing discussed within my home. I knew my mom had a religious past, but I didn't think my dad had ever been exposed to the word of God. When I brought up the idea of attending a church youth group to my mom, she was instantly a supporter.
I remember my first youth group event like it was yesterday. Many of the kids there had familiar faces, as most attended the same middle school as me. There were some unfamiliar faces, but it was hard to distinguish one person from the next due to many of them wearing these blue, Young X tee-shirts. I didn't see Chet or Risa when I first got there. I was approached by a few different kids before being introduced to the youth pastors: Troy, his wife Liz, and Shad. These guys were cool. They were adults, yet filled with energy and enthusiasm. When the event started, we played a game I had never played before. It involved a circle of people trying to eliminated one another by pulling each other into a trashcan in the middle. Afterwards, we all sat in a circle outside a trailer for a bible study. I remember there being some beat-up old furniture and Christmas lights strung around in no particular fashion. To be honest, I don't recall what the message was about, but I do remember thinking to myself that I had a lot of fun and met some pretty cool kids.
I continued going to that church. In fact, my nights at youth group events turned into spending Sunday mornings attending regular church services. Not only had I met a new group of people in a new town, I was introduced to God, his son Jesus, and the holy spirit. In terms of my social wellness, I had never felt so fulfilled in all my life. I now had a second family whom I learned to cherish more than any other group of people or individuals I had ever crossed paths with in the past. Little did I know at the time, but I had worked my way into a bond that would not be easily shaken as I had successfully done in the past.
I joined the Air Force right out of high school. My reasons for doing so are a different story, but I can promise you leaving Tierrasanta was the hardest move I had ever made. In moves prior, I learned to deal with my feelings my simply accepting that chapter in my life as being a closed book. The family I had gained in San Diego was not going down with a fight. I had people in my life who refused to allow me to slip away as a distant memory. Randy, Chrissy, Kjirsten, Troy, Mike, Chet, Jenny and many others continued to reach out to me even when I failed to reach back to them. No matter where I was, or what I was doing, they always found a way to walk back into my life when I needed it the most.
On Saturday night, just before midnight, I picked-up Randy from Tucson International Airport. There, he had the first of many surprises for me. With him, was another of our childhood friends-David. The three of us stopped at In-N-Out before hitting the open roads toward San Diego. We spent the entire drive reminiscing of stories from our past. Our plan was to reach San Diego and get a couple hours of sleep before starting our great comeback tour. The thrill and anticipation of being home was too much for any of us. We ended-up staying awake all day and into the night... visiting old friends and sharing more memories of our past. The next day, we did the same, all awhile visiting some of our most memorable hangout spots. It felt as though we had taken a step back in time.
We had spent much of Monday cruising around San Diego. Randy informed me that we had dinner plans at Jesse and Jenny's house... who also graciously opened their home to us as a place of refuge during our stay. Randy, David, and I stopped at a BBQ restaurant to pick-up some food to bring back for dinner. When we got into Tierrasanta, Randy told me we needed to swing by our childhood church to pick-up our old youth minister Troy, who had planned on joining our crew for some grub. When we pulled up to the church, I saw some other familiar faces I had not yet seen during this trip. I quickly jumped out of my truck to reacquaint myself with old friends. As I approached the front doors of the church, I could see there were people inside setting up what looked like a buffet line for some sort of function. Troy was standing outside talking to another dear friend of mine: Samer. I greeted the two them and asked what was going on inside. Troy informed me that the spread was for me and that I should head inside. My heart immediately began beating fast with anticipation. I was both excited and nervous. I didn't know who all would be here, and I was slightly uncomfortable knowing I was about to be the center of attention.
When I walked through the doors, I was quickly greeted by numerous familiar faces. As I scanned the room, I had locked eyes with many people I would never have thought of seeing during the trip. Randy, with the help of many others had put together an epic reunion. It was great getting to catch-up with old friends. It was even better getting to see others catch-up with each other. I was not the only person that had slipped away. As we entered our adult years, many in our family set-off in their our personal journeys. Here we were, coming together as one... over twenty years from my first youth group experience. Many people had brought pictures to share of our past. Troy even had on display one of those blue, Young X tee shirts. It was a truly surreal event.
Even though I was the guest of honor, I felt as though the event was a homecoming for all of us. Many tears were shed that night. For me, I realized I had a much larger support network than I had previously thought. My San Diego family was very much still alive and well. Even though I had tried my hardest to close that chapter in my life, the people in that church had refused to just let me walk away. I've lived an entirely second life since leaving San Diego. Those five years, with these amazing people, hold more of my heart and my memories than any others in any blimp of time over my life on this Earth. (Aside from my immediate family of course!)
Randy told me that he made the decision that this trip was a must after he read the blog entry, "Dig your trenches and prepare for battle." I knew I had supporters out there, but I didn't realize the impact my story was having on the people who support me most. My trenches are full... full of friends and family that will not allow this cancer to get the best of me. No matter what trials and tribulations I face, I know I have an army standing behind me... ready to pick me up when I fall. They are ready to hold me up when I am weak.
Thank you. Thank you for guarding that switch I tried to turn off. You mean more to me than words can even express. With your support, I will get through this.
As a lifelong member of the military community, I spent my entire life moving from one location to another. As a kid of a career Naval officer, I learned to adapt quickly to new surroundings so that I could meet people and make new friends. For most my life, I knew my relationships were temporary, which led me to also become good at forgetting people as a way to deal with my emotions. I've adapted the way I view and treat relationships to compliment my emotional needs. The only exception to my lifelong, protection policy was during a five year stint in San Diego.
When I was in the 8th grade, my family moved to a town within San Diego called Tierrasanta. This was the third San Diego location we resided inside of three years. My parents promised my sister and I this would be the last time we moved. To prove it, they bought a house... although I knew that didn't mean anything considering they had bought a home in the past, where I was again uprooted from after only a year. Tierrasanta is a hidden gem within San Diego. Not far from everything, it is a beautiful residential area nestled within a system of rolling hill and canyons. There are only a few way into the community, and unless you had business there, you wouldn't know it existed. It is the greatest town within the greatest city.
As a struggling teenager, I couldn't have hoped for a better place to live. Within my first few days of school, I met many kids I felt would make ideal candidates to be my new best friends. There were two kids in my P.E. class that took a liking to me: Chet and Risa. They knew each other from church and asked me if I would like to join them at one of their youth group events.
God had never been a huge figure in my life. I had been to church a couple times throughout my life, but religion was not a topic I recall hearing discussed within my home. I knew my mom had a religious past, but I didn't think my dad had ever been exposed to the word of God. When I brought up the idea of attending a church youth group to my mom, she was instantly a supporter.
I remember my first youth group event like it was yesterday. Many of the kids there had familiar faces, as most attended the same middle school as me. There were some unfamiliar faces, but it was hard to distinguish one person from the next due to many of them wearing these blue, Young X tee-shirts. I didn't see Chet or Risa when I first got there. I was approached by a few different kids before being introduced to the youth pastors: Troy, his wife Liz, and Shad. These guys were cool. They were adults, yet filled with energy and enthusiasm. When the event started, we played a game I had never played before. It involved a circle of people trying to eliminated one another by pulling each other into a trashcan in the middle. Afterwards, we all sat in a circle outside a trailer for a bible study. I remember there being some beat-up old furniture and Christmas lights strung around in no particular fashion. To be honest, I don't recall what the message was about, but I do remember thinking to myself that I had a lot of fun and met some pretty cool kids.
I continued going to that church. In fact, my nights at youth group events turned into spending Sunday mornings attending regular church services. Not only had I met a new group of people in a new town, I was introduced to God, his son Jesus, and the holy spirit. In terms of my social wellness, I had never felt so fulfilled in all my life. I now had a second family whom I learned to cherish more than any other group of people or individuals I had ever crossed paths with in the past. Little did I know at the time, but I had worked my way into a bond that would not be easily shaken as I had successfully done in the past.
I joined the Air Force right out of high school. My reasons for doing so are a different story, but I can promise you leaving Tierrasanta was the hardest move I had ever made. In moves prior, I learned to deal with my feelings my simply accepting that chapter in my life as being a closed book. The family I had gained in San Diego was not going down with a fight. I had people in my life who refused to allow me to slip away as a distant memory. Randy, Chrissy, Kjirsten, Troy, Mike, Chet, Jenny and many others continued to reach out to me even when I failed to reach back to them. No matter where I was, or what I was doing, they always found a way to walk back into my life when I needed it the most.
On Saturday night, just before midnight, I picked-up Randy from Tucson International Airport. There, he had the first of many surprises for me. With him, was another of our childhood friends-David. The three of us stopped at In-N-Out before hitting the open roads toward San Diego. We spent the entire drive reminiscing of stories from our past. Our plan was to reach San Diego and get a couple hours of sleep before starting our great comeback tour. The thrill and anticipation of being home was too much for any of us. We ended-up staying awake all day and into the night... visiting old friends and sharing more memories of our past. The next day, we did the same, all awhile visiting some of our most memorable hangout spots. It felt as though we had taken a step back in time.
We had spent much of Monday cruising around San Diego. Randy informed me that we had dinner plans at Jesse and Jenny's house... who also graciously opened their home to us as a place of refuge during our stay. Randy, David, and I stopped at a BBQ restaurant to pick-up some food to bring back for dinner. When we got into Tierrasanta, Randy told me we needed to swing by our childhood church to pick-up our old youth minister Troy, who had planned on joining our crew for some grub. When we pulled up to the church, I saw some other familiar faces I had not yet seen during this trip. I quickly jumped out of my truck to reacquaint myself with old friends. As I approached the front doors of the church, I could see there were people inside setting up what looked like a buffet line for some sort of function. Troy was standing outside talking to another dear friend of mine: Samer. I greeted the two them and asked what was going on inside. Troy informed me that the spread was for me and that I should head inside. My heart immediately began beating fast with anticipation. I was both excited and nervous. I didn't know who all would be here, and I was slightly uncomfortable knowing I was about to be the center of attention.
When I walked through the doors, I was quickly greeted by numerous familiar faces. As I scanned the room, I had locked eyes with many people I would never have thought of seeing during the trip. Randy, with the help of many others had put together an epic reunion. It was great getting to catch-up with old friends. It was even better getting to see others catch-up with each other. I was not the only person that had slipped away. As we entered our adult years, many in our family set-off in their our personal journeys. Here we were, coming together as one... over twenty years from my first youth group experience. Many people had brought pictures to share of our past. Troy even had on display one of those blue, Young X tee shirts. It was a truly surreal event.
Even though I was the guest of honor, I felt as though the event was a homecoming for all of us. Many tears were shed that night. For me, I realized I had a much larger support network than I had previously thought. My San Diego family was very much still alive and well. Even though I had tried my hardest to close that chapter in my life, the people in that church had refused to just let me walk away. I've lived an entirely second life since leaving San Diego. Those five years, with these amazing people, hold more of my heart and my memories than any others in any blimp of time over my life on this Earth. (Aside from my immediate family of course!)
Randy told me that he made the decision that this trip was a must after he read the blog entry, "Dig your trenches and prepare for battle." I knew I had supporters out there, but I didn't realize the impact my story was having on the people who support me most. My trenches are full... full of friends and family that will not allow this cancer to get the best of me. No matter what trials and tribulations I face, I know I have an army standing behind me... ready to pick me up when I fall. They are ready to hold me up when I am weak.
Thank you. Thank you for guarding that switch I tried to turn off. You mean more to me than words can even express. With your support, I will get through this.
Monday, March 6, 2017
Tres Amigos
Hello everyone! I want to start this blog entry by first thanking all of you following me and reposting the link to my blog on your Facebook pages. That last entry had more visitors than any other two combined. It feels good knowing my story is being enjoyed by others. This blog has been very therapeutic for me and has allowed me an outlet to express myself... something I usually struggle in doing.
So, today I had an appointment at the Banner Cancer Clinic with my new medical oncologist. She will be overseeing the administration of the experimental drug test. Since I am entering into this medical research program, this new medical oncologist will assume the lead role in my treat program. I will continue to see the Otolaryngologist (ENT Surgeon) and the Radiation Oncologist. All three doctors are also lead professors in their medical field for the University of Arizona's medical school. The three doctors communicate on a regular basis. I have a virtual medical record that is shared between all the Banner UMC doctors, which prevents me from being the guy in the middle messing-up the message in the telephone game. I feel incredibly blessed to be in good hands.
You will all be happy to know I was successful in delivering the "package" today.
I know a lot has occurred over the last four weeks, to include the roller-coaster of prognosis. So, allow me to re-cap where we currently stand...
I had a tumor located on the bottom of my tongue biopsied. The pathology reports came back positive for Squamous Cell Carcinoma, that was found to be well-differentiated and to the muscle tissue. I also had a CT scan completed, which shows I have six lymph nodes in my neck that appear to be oversized- one with an abnormal growth and dead cells in the center. The enlarged one is most likely infected with cancer cells based on its textbook appearance. I have also been approved for a clinical study where I will receive an experimental drug that is designed to increase the production of cancer killing T cells. With this drug, I will also receive a couple other supplements and medications known to slow down and/or prevent the progression of cancer. The clinical study will begin later next week, followed by surgery. I will most likely have two surgeries. The first surgery will involve a tongue bisection and the removal of all six lymph nodes in my neck. Once healed, I will have my tonsils removed because they look suspect. Once I have healed from the surgeries, I will definitely receive radiation, with a high possibility of chemotherapy.
Many of you have reached out to ask how I am doing. All in all, I'm okay. I've accepted the cancer for what it is. I am highly optimistic my outstanding medical team will eradicate the cancer from my body. To be honest... it is not the cancer or the cancer treatment that has me worried. What I worry about the most are the small things in life we tend to take for granted.
First and foremost is my military career. On May 17th of this year, I will have reached my seventeen year mark as an active duty Airman. I am scared to death I will not be allowed to complete my full twenty. I've been told that if medically retired due to cancer, I will get my retirement, plus some. To be frank, I would much rather do my twenty years and walk into the sunset having reached my goal rather than be medically retired, regardless how much money either provides.
I am also dreading what my quality of life will look like after this is all said and done. I've been reading up on the stories of oral cancer survivors on the Cancer Survivor Network. These amazing people had fought the good fight and now they are taking the time to educate people like me on what to expect. So, here is what I can expect... Radiation will most likely burn away most of my taste buds. Some will grow back, but food will never be the same. I will also loose the desire to chew and swallow because it will forever feel uncomfortable and painful. Depending on my tongue bisection, I may or may not need speech therapy to relearn how to talk. Oral cancer has the highest rate of return than any other cancer, which means I will spend the rest of my days getting CT scans and blood work.
I love the Air Force, I love eating, and I love communicating. There are many things I love that will continue being a cherished part of my life, but I will most definitely miss these three things. To compensate, I am eating as much of my favorite foods as possible over the next couple weeks. I will most likely gain weight, but according to the doctors, I will NOT have a problem loosing it in the months to come.
I know this entry wasn't as descriptive or entertaining as those in the past, but I really needed to express my thoughts, rather than paint a picture. I promise the next couple will be chocked full of tummy ticklers! My next appointment is not until next Thursday, but if you are lucky, I will post a shout-out while in SD.
So, today I had an appointment at the Banner Cancer Clinic with my new medical oncologist. She will be overseeing the administration of the experimental drug test. Since I am entering into this medical research program, this new medical oncologist will assume the lead role in my treat program. I will continue to see the Otolaryngologist (ENT Surgeon) and the Radiation Oncologist. All three doctors are also lead professors in their medical field for the University of Arizona's medical school. The three doctors communicate on a regular basis. I have a virtual medical record that is shared between all the Banner UMC doctors, which prevents me from being the guy in the middle messing-up the message in the telephone game. I feel incredibly blessed to be in good hands.
You will all be happy to know I was successful in delivering the "package" today.
I know a lot has occurred over the last four weeks, to include the roller-coaster of prognosis. So, allow me to re-cap where we currently stand...
I had a tumor located on the bottom of my tongue biopsied. The pathology reports came back positive for Squamous Cell Carcinoma, that was found to be well-differentiated and to the muscle tissue. I also had a CT scan completed, which shows I have six lymph nodes in my neck that appear to be oversized- one with an abnormal growth and dead cells in the center. The enlarged one is most likely infected with cancer cells based on its textbook appearance. I have also been approved for a clinical study where I will receive an experimental drug that is designed to increase the production of cancer killing T cells. With this drug, I will also receive a couple other supplements and medications known to slow down and/or prevent the progression of cancer. The clinical study will begin later next week, followed by surgery. I will most likely have two surgeries. The first surgery will involve a tongue bisection and the removal of all six lymph nodes in my neck. Once healed, I will have my tonsils removed because they look suspect. Once I have healed from the surgeries, I will definitely receive radiation, with a high possibility of chemotherapy.
Many of you have reached out to ask how I am doing. All in all, I'm okay. I've accepted the cancer for what it is. I am highly optimistic my outstanding medical team will eradicate the cancer from my body. To be honest... it is not the cancer or the cancer treatment that has me worried. What I worry about the most are the small things in life we tend to take for granted.
First and foremost is my military career. On May 17th of this year, I will have reached my seventeen year mark as an active duty Airman. I am scared to death I will not be allowed to complete my full twenty. I've been told that if medically retired due to cancer, I will get my retirement, plus some. To be frank, I would much rather do my twenty years and walk into the sunset having reached my goal rather than be medically retired, regardless how much money either provides.
I am also dreading what my quality of life will look like after this is all said and done. I've been reading up on the stories of oral cancer survivors on the Cancer Survivor Network. These amazing people had fought the good fight and now they are taking the time to educate people like me on what to expect. So, here is what I can expect... Radiation will most likely burn away most of my taste buds. Some will grow back, but food will never be the same. I will also loose the desire to chew and swallow because it will forever feel uncomfortable and painful. Depending on my tongue bisection, I may or may not need speech therapy to relearn how to talk. Oral cancer has the highest rate of return than any other cancer, which means I will spend the rest of my days getting CT scans and blood work.
I love the Air Force, I love eating, and I love communicating. There are many things I love that will continue being a cherished part of my life, but I will most definitely miss these three things. To compensate, I am eating as much of my favorite foods as possible over the next couple weeks. I will most likely gain weight, but according to the doctors, I will NOT have a problem loosing it in the months to come.
I know this entry wasn't as descriptive or entertaining as those in the past, but I really needed to express my thoughts, rather than paint a picture. I promise the next couple will be chocked full of tummy ticklers! My next appointment is not until next Thursday, but if you are lucky, I will post a shout-out while in SD.
Friday, March 3, 2017
Deuces!
Hello, and welcome back to my blog. In case you didn't already know... I truly appreciate you being here-sharing in my journey with mouth cancer. My sister recently informed me that my last few blog entries lacked the humor some of the originals had, so just for her, I shall try to step-up my game.
Today has been long and exhausting. It was my last day at work before going on some much needed R&R. I had to clear out my office and bunk to make room for my replacement. My medical appointments are starting to mount up and before we know it, I'll be under the knife. So, for now I will relinquish my position to another until I am back on my feet, ready to conquer the world.
I also had an appointment at the Banner Cancer Center. This appointment was with two medical researchers that wanted to talk to me about participating in a phase two, medical research study. Jessica came along with me, which I always appreciate because she is great at reminded me what questions I had wanted to ask, as well as, keeping all my paperwork organized.
We arrived about fifteen minutes early, which is perfect for me because I hate being late to anything! There was a lot of construction going on, but luckily, it didn't impact us one bit. The reception desk was directly in front of us as we walked into the building. We checked in and took a seat in the waiting room. The inside of the building looked nice. I could overhear an older woman ranting to a younger woman about recent political happenings. I made mention to Jess how amazed I was at how differently Americans interpret information from the media. I was familiar with the story, but had a completely different perspective on the situation. Jess rolled her eyes... she hates talking politics with me.
Two younger gals approached the waiting room, obviously looking for someone. They looked my way, but seemed very hesitant to address me. One of the girls took notice of my uniform name tape. Her eyes lit-up. "Mr. Smiley?" I'm guessing they didn't expect my wife to be with me. I suppose I should have stood at the bottom of the stairs with a sign, as if to be a limo driver picking up a stranger at the airport.
The four of us headed back to an exam room. The lead coordinator began asking me questions, inquiring into what I had been told of the research study. All I could tell her was what the ENT surgeon explained to me... that the test drug was designed to lessen cancer tumors. She went on to explain that the drug (IRX-2) was specifically designed to assist dendritic cells mature and activated T cells to multiply. WHAT? Basically, this drug is like Red Bull for cancer fighting cells. The drug is meant to assist this body in fighting off cancer.
This experimental drug will require me to spend 21 days preparing my body for war. I will spend 11 days taking a series of oral medications and neck injections on each of the remaining 10 days. I will not have surgery until the entire regiment is complete. The hope is that my body will be a lean, mean cancer fighting machine before they cut into my body and begin pissing-off those cancer cells. It also helps my body to kill off any cancer stragglers left behind. Now... the coolest part of this drug is that it acts like an immunization. Once I have received the entire series... all I need is an annual booster and my body will continue to produce higher levels of T cells.
This was a lot to take in at first. The fact that this is still an experimental drug is slightly unnerving. I was given a pamphlet about experimental research studies. According to this piece of literature, Phase II has two purposes: to determine if the new treatment has an effect of a certain cancer and to see how the new treatment affects the human body. Hmm...
I needed to think about it. The gals were very understanding. They offered to allow Jess and I to talk about it over lunch and to contact them later when we had a decision. So... off we went on a lunch date.
Jessica and I went to a local hot spot called Prep and Pastry. It was packed full of people. We waited for about twenty minutes before getting a table. Normally I would have been a little perturbed at the wait, but the food smelled and looked amazing. Once we got to our table, Jess and I began looking over the information given to us about the drug study. To be honest... I was pretty well sold on the idea, but I knew talking it over with Jess was the smart thing to do. There were a few items of concern we noted, but all in all, I was set on participating in the drug trial. The way I saw it... if this had any luck in helping to prevent any cancers in the future, I wanted in! Plus, its like being an astronaut... there is a sense of adventure knowing I'm getting to do something very few humans have done before.
Jess and I headed back to the cancer clinic after lunch. I called the coordinator gals and told them we were in the waiting room. They seemed happy that we had returned and promised to be right down. We were barely seated for three minutes when they came walking down the stairs. We headed to another exam room so we could go over more details of the research study.
There was some small talk about lunch before we got into the nitty gritty. The lead coordinator gal asked us if we had any concerns she could address. I told her that I was a little irritated that one out of every three participants participating received a placebo. I wasn't sure I wanted to invest such a large amount of time into something I may not even get to truly experience. She explained that although I may not receive the MAIN drug in testing, I would receive many other oral medications that have been proven to aid in the cure of cancer. I felt like I was getting a consolation prize, but whatever...where do I sign.
After I signed my life away, the coordinator gal began listing off numerous tasks I would need to complete before they could begin giving me IRX-2. I had to give blood, see ANOTHER doctor, answer the world's longest medical questionnaire, and provide a stool sample. . . . . . .
Why is it I am a grown ass man and still find poop jokes so funny? How does one give a stool sample? Do I use one of those little green aquarium nets to fish a sample out of the toilet? I was so pleased that this topic had come-up. Jess mentioned it to me at lunch, but we didn't speak much of it. As if the timing couldn't get any better... a young man entered the room with a fist full of vacutainers for taking blood samples and a clear plastic baggy with a clear plastic cup and what looked like a coffee stir stick. Now... I've given blood and I've given urine, but I have never given doo-doo. I don't know if the girls found it as amusing as I, but I couldn't help myself. How do I poop in a cup? What if the doo-doo is too long for the cup? How much do they need? WHY would they make it a CLEAR cup with a CLEAR plastic bag?!?! How many people have you seen walking around with a poop sample? Looking at the cup, I could only imagine my days working at Dairy Queen serving chocolate soft serve... I was a ten year old boy trapped in the body of a thirty-six year old man!
I had some blood taken and scheduled a couple more appointments with the coordinators. Right now I am still being evaluated to see if I meet the requirements for the research study. If I do indeed go along with the research study, I will not have surgery until April. If I deny the study, I could possibly have surgery in the next few weeks. The research study buys me some time so I can go to San Diego. I really need to go home... it has been way too long.
Today has been long and exhausting. It was my last day at work before going on some much needed R&R. I had to clear out my office and bunk to make room for my replacement. My medical appointments are starting to mount up and before we know it, I'll be under the knife. So, for now I will relinquish my position to another until I am back on my feet, ready to conquer the world.
I also had an appointment at the Banner Cancer Center. This appointment was with two medical researchers that wanted to talk to me about participating in a phase two, medical research study. Jessica came along with me, which I always appreciate because she is great at reminded me what questions I had wanted to ask, as well as, keeping all my paperwork organized.
We arrived about fifteen minutes early, which is perfect for me because I hate being late to anything! There was a lot of construction going on, but luckily, it didn't impact us one bit. The reception desk was directly in front of us as we walked into the building. We checked in and took a seat in the waiting room. The inside of the building looked nice. I could overhear an older woman ranting to a younger woman about recent political happenings. I made mention to Jess how amazed I was at how differently Americans interpret information from the media. I was familiar with the story, but had a completely different perspective on the situation. Jess rolled her eyes... she hates talking politics with me.
Two younger gals approached the waiting room, obviously looking for someone. They looked my way, but seemed very hesitant to address me. One of the girls took notice of my uniform name tape. Her eyes lit-up. "Mr. Smiley?" I'm guessing they didn't expect my wife to be with me. I suppose I should have stood at the bottom of the stairs with a sign, as if to be a limo driver picking up a stranger at the airport.
The four of us headed back to an exam room. The lead coordinator began asking me questions, inquiring into what I had been told of the research study. All I could tell her was what the ENT surgeon explained to me... that the test drug was designed to lessen cancer tumors. She went on to explain that the drug (IRX-2) was specifically designed to assist dendritic cells mature and activated T cells to multiply. WHAT? Basically, this drug is like Red Bull for cancer fighting cells. The drug is meant to assist this body in fighting off cancer.
This experimental drug will require me to spend 21 days preparing my body for war. I will spend 11 days taking a series of oral medications and neck injections on each of the remaining 10 days. I will not have surgery until the entire regiment is complete. The hope is that my body will be a lean, mean cancer fighting machine before they cut into my body and begin pissing-off those cancer cells. It also helps my body to kill off any cancer stragglers left behind. Now... the coolest part of this drug is that it acts like an immunization. Once I have received the entire series... all I need is an annual booster and my body will continue to produce higher levels of T cells.
This was a lot to take in at first. The fact that this is still an experimental drug is slightly unnerving. I was given a pamphlet about experimental research studies. According to this piece of literature, Phase II has two purposes: to determine if the new treatment has an effect of a certain cancer and to see how the new treatment affects the human body. Hmm...
I needed to think about it. The gals were very understanding. They offered to allow Jess and I to talk about it over lunch and to contact them later when we had a decision. So... off we went on a lunch date.
Jessica and I went to a local hot spot called Prep and Pastry. It was packed full of people. We waited for about twenty minutes before getting a table. Normally I would have been a little perturbed at the wait, but the food smelled and looked amazing. Once we got to our table, Jess and I began looking over the information given to us about the drug study. To be honest... I was pretty well sold on the idea, but I knew talking it over with Jess was the smart thing to do. There were a few items of concern we noted, but all in all, I was set on participating in the drug trial. The way I saw it... if this had any luck in helping to prevent any cancers in the future, I wanted in! Plus, its like being an astronaut... there is a sense of adventure knowing I'm getting to do something very few humans have done before.
Jess and I headed back to the cancer clinic after lunch. I called the coordinator gals and told them we were in the waiting room. They seemed happy that we had returned and promised to be right down. We were barely seated for three minutes when they came walking down the stairs. We headed to another exam room so we could go over more details of the research study.
There was some small talk about lunch before we got into the nitty gritty. The lead coordinator gal asked us if we had any concerns she could address. I told her that I was a little irritated that one out of every three participants participating received a placebo. I wasn't sure I wanted to invest such a large amount of time into something I may not even get to truly experience. She explained that although I may not receive the MAIN drug in testing, I would receive many other oral medications that have been proven to aid in the cure of cancer. I felt like I was getting a consolation prize, but whatever...where do I sign.
After I signed my life away, the coordinator gal began listing off numerous tasks I would need to complete before they could begin giving me IRX-2. I had to give blood, see ANOTHER doctor, answer the world's longest medical questionnaire, and provide a stool sample. . . . . . .
Why is it I am a grown ass man and still find poop jokes so funny? How does one give a stool sample? Do I use one of those little green aquarium nets to fish a sample out of the toilet? I was so pleased that this topic had come-up. Jess mentioned it to me at lunch, but we didn't speak much of it. As if the timing couldn't get any better... a young man entered the room with a fist full of vacutainers for taking blood samples and a clear plastic baggy with a clear plastic cup and what looked like a coffee stir stick. Now... I've given blood and I've given urine, but I have never given doo-doo. I don't know if the girls found it as amusing as I, but I couldn't help myself. How do I poop in a cup? What if the doo-doo is too long for the cup? How much do they need? WHY would they make it a CLEAR cup with a CLEAR plastic bag?!?! How many people have you seen walking around with a poop sample? Looking at the cup, I could only imagine my days working at Dairy Queen serving chocolate soft serve... I was a ten year old boy trapped in the body of a thirty-six year old man!
I had some blood taken and scheduled a couple more appointments with the coordinators. Right now I am still being evaluated to see if I meet the requirements for the research study. If I do indeed go along with the research study, I will not have surgery until April. If I deny the study, I could possibly have surgery in the next few weeks. The research study buys me some time so I can go to San Diego. I really need to go home... it has been way too long.
Wednesday, March 1, 2017
Dig your trenches and prepare for battle!
Hi. Welcome back to my blog. As promised, I've returned to share with you the outcome of today's medical appointment with the otolaryngology (ENT) surgeon. To be honest... this has not been the best of days.
Jessica woke me up at 0510, which is ten minutes BEFORE my normal wake-up, and an hour before I had planned to wake-up. I was annoyed at first, but later grateful for having spent an hour drinking coffee and watching the news along side her without the kids yelling and screaming. The youngsters awoke just in time for me to get ready to leave for my medical appointment at Banner. Jess went with me, and on our way out, we dropped the kids off at school. It was nice getting to see them off, considering I am usually at work by that point in the morning.
The wife and I headed to the University's main hospital where I was scheduled to meet with my ENT surgeon for the first time. I assumed parking would be easy since it was only eight in the morning, but "BOY" was I wrong. We ended up on the roof of the parking garage...again! There were no signs pointing us in the right direction this time, so we had to stop to ask for directions. When we found our way to the right place, we entered into an empty waiting room. I felt as though this was a good sign that I would be seen quickly.
I had to fill out some forms before I could be called back. It was four pages, mostly asking me specific questions about certain parts of my body. Jess watched over my shoulder, correcting me when I miss-marked some of the responses... largely due to my inability to slow down and read the questions rather than assuming I knew the answers.
It wasn't long after I turned in the questionnaire that I was called back by a nurse. Jess and I followed the nurse a short way down a narrow hallway before arriving at the examination room. The room was small-smaller than most exam rooms. It was filled with fun toys that looked more like torture devices. I quickly identified a laryngoscope, which was a medical procedure I had yet to experience. The scope looked fancy. It was high-definition (HD) and attached to a monitor via some cables. I sat on the traditional patient examination bed/chair while Jess took a seat in the corner next to the door.
The nurse took my vitals. I must have been feeling well rested and stress-free because my blood pressure was looking good... 128/78. Now that I think of it... there is a high probability that my relaxed state was largely due to the killer massage I had received the day before.
I was also given a couple sprays of numbing agent in each of my nostrils. It was meant to numb my nose and throat in preparation of the laryngoscope. After the nurse had taken my vitals and set me up for a scoping, she left... never to be seen again.
The wait for the doctor felt like forever. I'm sure she was seeing another patient, but I couldn't help thinking the worst. I told Jess that I wouldn't be surprised if my CT scans from the day prior had not made their way into the hospital's database. Maybe the doctor had just received the scans and had just begun looking them over. Maybe my case was more complicated than I thought. I was anxious... I knew this medical appointment would reveal the true extent of my cancer dilemma.
There was a knock on the exam room door. Almost immediately, the door opened and the doctor and two assistants entered the small room. The doctor was very nice. She was pleasant, yet direct, which I find welcoming. The doc didn't beat around the bush. I was asked a couple questions, but it didn't take long before she had her fingers in my mouth feeling around. She asked me to lift my tongue... revealing the dirty culprit.
"Aw... It's so cute!"
Cute? Did she just call my tumor cute? What in the world is cute about cancer?
The doc informed us that the tumor on my tongue was small. It was insignificant and would be easy to cut away. Whew, what a relief!
She reached for the laryngoscope. Wait... I thought it was cute? She wanted a look in my throat. The medicine I had been given earlier made everything numb, so inserting the scope wasn't a problem. I told her I was sure my nasal cavity was messed up because I had issues inserting a nasopharyngeal airway during Combat Life Saver training in Iraq. She was quick to point out that there was a high probability we didn't know what we were doing. I felt silly...
The laryngoscope didn't hurt at all. The entire procedure only lasted a couple minutes, and the worst part was having the scope removed.
The doc looked over to one of her assistants and made a comment about my left tonsil. She then informed me that she was concerned on the way my tonsils looked, especially the one to the left (the same side my tongue tumor is on.) I proceeded to tell her of my history with tonsil issues, to include the many strep throat tests I received as a kid.
Next, we took a look at my CT scan results. The doc began by first educating Jess and I on what we were looking at on the scans. She started at the top on my skull and slowly worked her way down. She pointed out my brain, eye balls, sinus cavities, and upper pallet. This was all great, but I was only interested in my lymph nodes. She continued down... past my teeth, and eventually to where my tongue was located. She pointed out where my tongue tumor was, but still seemed very unimpressed. Just below the tongue are six lymph nodes, three on each side. Five of them looked like jelly beans, but there was ONE... One of the lymph nodes looked like a jelly bean that had given birth to a butter bean. Our conversation took a turn. Everything became very serious, very quick. I was informed the growth on the one lymph node was concerning. Without a biopsy, we could only assume it was also cancerous.
I immediately fell into a temporary state of shock. I felt the same way I had when first learning of the results of my initial pathology report. We were hoping my cancer was isolated to the tongue. If it was anywhere else... my treatment would be more invasive than we would have hoped. The worst news I could have received had just been given to me. The cancer has spread. Not only is it on my tongue... there is a good possibility it is on a lymph node and possibly a tonsil. I was crushed, and by the look on Jessica's face, she was also!
I began asking about the treatment. The doctor informed us that I would definitely need surgery, most likely two. One for the tongue and lymph nodes and the other to address the tonsils. The first surgery will require an incision around the crease in my neck, as if being cut from behind by my worst enemy. She planned to go in and remove everything. I don't even fully understand what those lymph nodes do, but it doesn't matter... she is going to remove all of them. As if it would make me somehow feel better, she went on to inform me that I would have a "cool" Frankenstein looking, stapled wound around my neck. If this were going down around Halloween, I might be okay with this, but it's not!
After the cancer, I would most likely get radiation, and possibly chemotherapy. Wait...what? The Radiation Oncologist was almost certain I would not need radiation. This is the type of misleading information you can expect when you don't see the doctors in the right order.
DISCLAIMER... although upset, I do NOT hold anyone responsible for the change in prognosis. The RadOnc had no idea the cancer was anywhere other than my tongue.
Because the cancer has spread into my lymph nodes, I would most likely need radiation following surgery. So just to recap, I am now looking at two surgeries and the possibility of radiation.
The doctor also informed me of a clinical trial that was going on she felt I was a good candidate for. It was specific to mouth cancer and was in its second stage of testing. The trial was testing a new medicine, designed to shrink tumors associated with oral cancers. It was in support of the University of Arizona, so I agreed to be a guinea pig.
I'm in total disbelief. I had prepared myself to hear good news. Although the tongue tumor is cute, the intervention needed to knock this crap out will be much more than I had hoped for. I was hoping the cancer could be cut out in a matter of minutes, followed by a couple days of healing, and maybe some speech therapy to get me back on track. Instead... I am faced with having all that oral cancer has to offer. I am happy that the cancer on my tongue is small. This means the likely-hood of losing my ability to speak is very slim. I am also pleased to hear the doctors' affirmation that this was 100% curable.
I was hoping our blog relationship would end after a month or two. Not that I don't enjoy out time together... I just value my health more than my story telling. It looks like we are glued to one-another for much longer than anticipated. We are looking at a six-month treatment plan. I hope to continue this blog for the duration of this journey. I guess we should all dig-in and prepare for the long battle ahead. Bare with me as I am certain the next couple weeks will be hectic. My surgey is scheduled for mid to late March. I am hoping to take a trip to San Diego in the very near future... before continuing on with this cancer trip. If you are in SD and would like to hook-up, please let me know. I have no agenda and no plans as of now. I need to get away... at least for a couple days.
Jessica woke me up at 0510, which is ten minutes BEFORE my normal wake-up, and an hour before I had planned to wake-up. I was annoyed at first, but later grateful for having spent an hour drinking coffee and watching the news along side her without the kids yelling and screaming. The youngsters awoke just in time for me to get ready to leave for my medical appointment at Banner. Jess went with me, and on our way out, we dropped the kids off at school. It was nice getting to see them off, considering I am usually at work by that point in the morning.
The wife and I headed to the University's main hospital where I was scheduled to meet with my ENT surgeon for the first time. I assumed parking would be easy since it was only eight in the morning, but "BOY" was I wrong. We ended up on the roof of the parking garage...again! There were no signs pointing us in the right direction this time, so we had to stop to ask for directions. When we found our way to the right place, we entered into an empty waiting room. I felt as though this was a good sign that I would be seen quickly.
I had to fill out some forms before I could be called back. It was four pages, mostly asking me specific questions about certain parts of my body. Jess watched over my shoulder, correcting me when I miss-marked some of the responses... largely due to my inability to slow down and read the questions rather than assuming I knew the answers.
It wasn't long after I turned in the questionnaire that I was called back by a nurse. Jess and I followed the nurse a short way down a narrow hallway before arriving at the examination room. The room was small-smaller than most exam rooms. It was filled with fun toys that looked more like torture devices. I quickly identified a laryngoscope, which was a medical procedure I had yet to experience. The scope looked fancy. It was high-definition (HD) and attached to a monitor via some cables. I sat on the traditional patient examination bed/chair while Jess took a seat in the corner next to the door.
The nurse took my vitals. I must have been feeling well rested and stress-free because my blood pressure was looking good... 128/78. Now that I think of it... there is a high probability that my relaxed state was largely due to the killer massage I had received the day before.
I was also given a couple sprays of numbing agent in each of my nostrils. It was meant to numb my nose and throat in preparation of the laryngoscope. After the nurse had taken my vitals and set me up for a scoping, she left... never to be seen again.
The wait for the doctor felt like forever. I'm sure she was seeing another patient, but I couldn't help thinking the worst. I told Jess that I wouldn't be surprised if my CT scans from the day prior had not made their way into the hospital's database. Maybe the doctor had just received the scans and had just begun looking them over. Maybe my case was more complicated than I thought. I was anxious... I knew this medical appointment would reveal the true extent of my cancer dilemma.
There was a knock on the exam room door. Almost immediately, the door opened and the doctor and two assistants entered the small room. The doctor was very nice. She was pleasant, yet direct, which I find welcoming. The doc didn't beat around the bush. I was asked a couple questions, but it didn't take long before she had her fingers in my mouth feeling around. She asked me to lift my tongue... revealing the dirty culprit.
"Aw... It's so cute!"
Cute? Did she just call my tumor cute? What in the world is cute about cancer?
The doc informed us that the tumor on my tongue was small. It was insignificant and would be easy to cut away. Whew, what a relief!
She reached for the laryngoscope. Wait... I thought it was cute? She wanted a look in my throat. The medicine I had been given earlier made everything numb, so inserting the scope wasn't a problem. I told her I was sure my nasal cavity was messed up because I had issues inserting a nasopharyngeal airway during Combat Life Saver training in Iraq. She was quick to point out that there was a high probability we didn't know what we were doing. I felt silly...
The laryngoscope didn't hurt at all. The entire procedure only lasted a couple minutes, and the worst part was having the scope removed.
The doc looked over to one of her assistants and made a comment about my left tonsil. She then informed me that she was concerned on the way my tonsils looked, especially the one to the left (the same side my tongue tumor is on.) I proceeded to tell her of my history with tonsil issues, to include the many strep throat tests I received as a kid.
Next, we took a look at my CT scan results. The doc began by first educating Jess and I on what we were looking at on the scans. She started at the top on my skull and slowly worked her way down. She pointed out my brain, eye balls, sinus cavities, and upper pallet. This was all great, but I was only interested in my lymph nodes. She continued down... past my teeth, and eventually to where my tongue was located. She pointed out where my tongue tumor was, but still seemed very unimpressed. Just below the tongue are six lymph nodes, three on each side. Five of them looked like jelly beans, but there was ONE... One of the lymph nodes looked like a jelly bean that had given birth to a butter bean. Our conversation took a turn. Everything became very serious, very quick. I was informed the growth on the one lymph node was concerning. Without a biopsy, we could only assume it was also cancerous.
I immediately fell into a temporary state of shock. I felt the same way I had when first learning of the results of my initial pathology report. We were hoping my cancer was isolated to the tongue. If it was anywhere else... my treatment would be more invasive than we would have hoped. The worst news I could have received had just been given to me. The cancer has spread. Not only is it on my tongue... there is a good possibility it is on a lymph node and possibly a tonsil. I was crushed, and by the look on Jessica's face, she was also!
I began asking about the treatment. The doctor informed us that I would definitely need surgery, most likely two. One for the tongue and lymph nodes and the other to address the tonsils. The first surgery will require an incision around the crease in my neck, as if being cut from behind by my worst enemy. She planned to go in and remove everything. I don't even fully understand what those lymph nodes do, but it doesn't matter... she is going to remove all of them. As if it would make me somehow feel better, she went on to inform me that I would have a "cool" Frankenstein looking, stapled wound around my neck. If this were going down around Halloween, I might be okay with this, but it's not!
After the cancer, I would most likely get radiation, and possibly chemotherapy. Wait...what? The Radiation Oncologist was almost certain I would not need radiation. This is the type of misleading information you can expect when you don't see the doctors in the right order.
DISCLAIMER... although upset, I do NOT hold anyone responsible for the change in prognosis. The RadOnc had no idea the cancer was anywhere other than my tongue.
Because the cancer has spread into my lymph nodes, I would most likely need radiation following surgery. So just to recap, I am now looking at two surgeries and the possibility of radiation.
The doctor also informed me of a clinical trial that was going on she felt I was a good candidate for. It was specific to mouth cancer and was in its second stage of testing. The trial was testing a new medicine, designed to shrink tumors associated with oral cancers. It was in support of the University of Arizona, so I agreed to be a guinea pig.
I'm in total disbelief. I had prepared myself to hear good news. Although the tongue tumor is cute, the intervention needed to knock this crap out will be much more than I had hoped for. I was hoping the cancer could be cut out in a matter of minutes, followed by a couple days of healing, and maybe some speech therapy to get me back on track. Instead... I am faced with having all that oral cancer has to offer. I am happy that the cancer on my tongue is small. This means the likely-hood of losing my ability to speak is very slim. I am also pleased to hear the doctors' affirmation that this was 100% curable.
I was hoping our blog relationship would end after a month or two. Not that I don't enjoy out time together... I just value my health more than my story telling. It looks like we are glued to one-another for much longer than anticipated. We are looking at a six-month treatment plan. I hope to continue this blog for the duration of this journey. I guess we should all dig-in and prepare for the long battle ahead. Bare with me as I am certain the next couple weeks will be hectic. My surgey is scheduled for mid to late March. I am hoping to take a trip to San Diego in the very near future... before continuing on with this cancer trip. If you are in SD and would like to hook-up, please let me know. I have no agenda and no plans as of now. I need to get away... at least for a couple days.
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