My Story
My intention behind all of this typing is to hopefully give some help to someone ambushed by a shocking diagnosis. I have joked to my wife that we may be the only ones to ever read this, but if for some reason it gives comfort to one other person, it is worth it.
I guess I will start at the start
On February 10, 2018 I went to dinner with my wife and decided to be adventuresome and order duck. A few hours later I started to feel nauseous and was concerned that I may of had food poisoning. After a bout of vomiting I felt instantly better. The next day after I ate again I felt sick and had some concern. I decided to ride things out and see how I felt during the week. I finally went to my doctor after a few days and he diagnosed me with Gastritis. I took some medication and felt better thinking that this episode was behind me. After a day of eating, all my symptoms returned and I was experiencing severe back pain. My wife directed me to go to the Emergency Room for a check up. The date I went into the Emergency Room was Friday, February 16, 2018. I was told shortly after arriving that I had a bout of Pancreatitis. After some testing I was told that my Gall Bladder checked out fine and that I should have a scan.
That is when my world changed.
I was told I had something abnormal on my scan and I needed to be transferred to a hospital in St Louis, Missouri. I will tell you the truth, being told you have a spot on your Pancreas is not something you want to hear. I instantly thought I just received a death sentence and had to be medicated for transfer by ambulance. Once I arrived at the hospital I had to wait two days until I could have a endoscopic test completed. For two days I was thinking that I may not see the end of the year. You think you are strong and sometimes are amazed to find out how fragile you really are.
I was the healthiest sick person I knew
Prior to my initial symptoms I have never really had anything medically wrong with me beyond the flu. I was in decent shape and training to be in a mini triathlon in April. I was always strong and felt that severe illness only affects other people. I was strong of body and mind. Or so I thought.
I was told after my first MRI and Endoscopic test on Monday (February 19th) that I had an IPMN -Intraductal Papillary Mucinous Neoplasm. Ok, so what does that mean? Basically it means I had a mucus that contained cells that were pre-cancerous, but would more than likely change into cancer. The next thing I know is a surgeon comes into my room and tells me that I will need a surgery called Whipple and it would basically remove this IPMN. The catch – I would also lose some body parts including part ( or all) of my Pancreas, some Stomach area and my Gall Bladder. I was told as long as the margins of the removed pancreas were clear of cancer, I would be able to keep the remaining part of my Pancreas. If not they would remove my entire Pancreas and I was an instant diabetic. That was a lot to process on a Monday.
I was on fluids for four days to treat my pancreatitis before being sent home. The crazy thing is I felt completely normal. I was told I had to wait four weeks before my consult with the surgeon because I had to reduce the swelling in my Pancreas. FOUR WEEKS!!! I was ready to have whatever was growing inside me removed that day. I was put on a low fat diet to help with the inflammation and to prepare for eventual surgery. Thus far all I heard was “we do not think it is cancer yet, but we can not be sure until we biopsy it”. Your mind tends do go to a dark place, or at least mine did. I had anxiety and panic attacks to the point I needed medication to help. I was prescribed Xanex by my doctor to help. It did not. In fact I took two pills and decided that it had no effect on me. I flushed the rest of the pills.
Waiting was hard for me. I had my mind racing in a thousand directions and concerns. I had always an inner sense that I can overcome anything and be better for it on the other side. I did not see the upside to this. I was mentally fragile and depressed. I tried to act strong but I pretty much cried everyday wishing that this was a dream. I was a zombie at times with my family because I was in thought and sadness. I never knew what depression looked like and how someone could be so upset that they would be affected mentally. I do now. My mind went to a dark place. How could a guy that does not drink, never even tried drugs end up with this monster inside of him? Why did God do this to me? It was at that point that I simply slowed down and asked God to give me peace until my surgery. I was beaten and could not continue on my own. The next day I truly felt more relaxed and stronger.
My wife was able to get me a second opinion consult at Johns Hopkins in Baltimore, Maryland. On March 6, 2018 we met with a leading pancreatic surgeon to discuss my case. After another C-Scan the surgeon informed me that he did not believe it was cancerous, but a surgery would be needed to prevent it from becoming so in the future. I dropped to my knees and thanked God for this news. Hearing over and over , “We do not think it is cancer” was something that I continued to hold on to. I was to continue my low fat diet to decrease the inflammation on my pancreas and wait for surgery. I weighed 198 pounds at the start of my symptoms. By the time surgery came around I was 185 pounds due to my diet. My consult in St Louis took place on March 19, 2018. I was told I would be scheduled for Whipple surgery on April 3, 2018.
I remember on April 2 thinking I will not be able to sleep because of what is about to take place the next day. I had only seen surgery on TV and had no idea what to expect. I knew this was one of the big boy surgeries that doctors performed and would take up to ten hours to complete. To my surprise I slept like a champ that night. Maybe it was all the built up emotions that just wore me out, I am not sure. I woke up ready to get things over with. I knew that there was a chance I may not wake up from the procedure, and I made peace with that. I remember on the drive in to the hospital I just wanted to watch everything pass by from the window of the car. I wanted to soak up the world in case it was my last glimpse. Dramatic, right? After arrival, I got into my surgical gown and just waited for 7:30AM. I was wheeled into the surgical room and announced I was here for my nose job. Crickets from the surgical team. I always thought there would be some dramatic countdown as I went under. I was out like a light ten seconds after I was in the room.
Surgery
April 3, 2018 – My second birthday. The new me was born.
I had 35% of my Pancreas removed, my Gall Bladder, Duodenum and part of my Stomach. My surgery lasted 8 hours. The doctors stated that they saw no “active cancer” and that my lymph nodes and margins were all clear. They stated that my Pancreas was so irritated and inflamed that they almost could not continue with the surgery. The first step of my journey was over. That night I woke up to the sound of “Mr. May” ringing in my ear. I was in a hospital bed with tubes hanging out of me and feeling like I lost a UFC fight. I was told that I would be moved to a chair and then we would try to walk soon. Did they not read my chart? I just had the grand daddy of surgeries people. Walk? I had been told prior to surgery that the sooner I walked, the quicker the process of recovery would be. I remember trying to sit up and afraid that I would rip my new insides out. I was able to get to my feet and with the help of a nurse took some steps out of my room and then returned. I had walked on my own less than 24 hours after I had a Whipple surgery. I remember my family visiting me and talking to me. I remember fighting to keep my eyes open and struggling to not go back to sleep. I lost. The next day I woke up sore and wanting something to drink. I was told that I needed to urinate before I could be taken to my own room or the catheter would need to be placed back in. That is pressure to perform! Luckily things worked out. I was placed in my room on April 4, 2018. I was told I could remain there from 7 – 10 days recovering.
Recovery
I remember thinking besides being sore, I can handle this. I was on Morphine. Morphine is a powerful drug. I was not able to sit up, but I was not in intense pain. The pain ball was wonderful. Every 15 minutes I could get my pain meds. I remember being really hot even though everyone else was in coats and blankets because I wanted the room so cool. After two days I was removed from the morphine and replaced with oral pain meds. Life was different then. I was really sore and could tell my body had been altered. I was able to get up out of bed and walk the halls to help with healing and prevent blood clots. By the way, the worst thing about my entire recovery was the heparin shot I was given daily. Imagine bruising your arm every day then poking it with a pin. Times that by 100! The pain was so much I finally asked if I could get the shot in my bruised stomach. That happened once. Back to the arm because the stomach pain was intense. I was able to try solid food on day three. I was told to eat slow and steady. I remember eating and then suddenly feeling very flush and sweat started pouring out of me. This did not go well. Was my new plumbing not working? This is called “dumping”. I was put back on my liquid diet for 24 hours and told to try again. The next effort was successful and besides getting full really quickly, I was able to eat solids for the first time. I continued to recover every day and was able to walk and do my physical therapy. I remember the most painful thing was getting back into bed after my walks. I was taught to do a “log roll” to make things easier on my body. It is amazing how your core affects the rest of your body during movement.
I was informed that I must pass gas and have a solid bowel movement before I can be considered for release from the hospital. That is when you start to wonder about your new plumbing and if it will really work. One thing you notice and others do as well when you have been in a hospital bed for four days – you start to smell. A shower was on the agenda. I had taken many showers in my life so this would be a breeze. It turned out to be one of the most taxing physical efforts I have ever attempted. My wife helped with my drains and tubes in the shower to prevent my surgical area from getting too wet. I remember being exhausted standing there getting water sprayed on me. I also remember once I was back in bed feeling so much better and refreshed. Finally on day five I had a break thru in the digestion department and had success! I was asked if I felt ready to go home. You would think I would automatically say yes. I did not. I was concerned about complications and did not want to go home only to return to have something fixed. Finally the all clear was given on day seven and I was to go home! April 10, 2018 I was home. I had a power recliner that we rented waiting for me to make getting up and down easier. That was still the hardest thing for me to do. The next hurdle was final pathology.
Pathology
I had been told over and over that it was not suspected to be cancer, from my first test to the actual surgery, but rather an IPMN. Let’s just make it official was my thought process. April 12, 2018 I had a follow up call from my doctors office about my recovery. I stated things were fine and that I was recovering ahead of schedule. As an afterthought I asked if my pathology was in and the nurse stated she would look for me. She came back and said that it was in and that I had Stage 1A adenocarcinoma. Uhhh come again????? I was devastated and in shock. This was the first time the word cancer had been officially used with me. I asked to speak to a surgeon and they explained to me that they still caught things early and that they removed anything that would be a problem. Cue me going to that dark place again for a moment. I had my first post op visit with my surgeon and had a million questions about what my next step was. When I asked him about my pathology report he stated that there were still questions regarding things and he was not ready to have an official report. I was confused to say the least. I prayed to God and asked for him to cure me. April 30, 2018 I had my next scheduled visit to remove staples from my incision. After the staples were removed my surgeon gave me a pathology report that stated diagnosis changed! I was in disbelief. Did a major cancer center really just give me paper work stating that they had changed the diagnosis from cancer to pre cancer and I would not need chemo or radiation??? Of course I wondered, why the change? It was explained that pathology is more of an art than exact science in some instances and the pathologist wanted to error on the side of caution with his initial view. Once it was examined by a review board from Johns Hopkins and Walter Reed, everyone including the initial pathologist confirmed it was not cancer. Thank you God! I was home from surgery and my body was recovering and working. My weight was down to 163 pounds.
Life
I have been so blessed during this life event. The truth is only 5% of patients that develop Pancreatic Cancer are even diagnosed as early as I was. Most people are farther along and advanced in the disease before the symptoms appear. Not everyone is even a candidate to have a Whipple performed. I am truly lucky and blessed that for some reason (maybe it was the duck?) my symptoms appeared and caused me to go in for a scan. I have read stories of people fighting advanced stages of this disease and beating it. You are truly stronger than I am and I am inspired by you. I want to be a better person in the future. I have always been a decent soul, but I want to take it to the next level. I feel like I had a wake up call in life and that some things can not or should not wait. I have always been a chronic planner and would always want something to look forward to in the future instead of that instant gratification. I think I need to compromise on that belief. Nothing is promised for tomorrow. Live life. Love life.
Rage, rage against that dying light!