Nov 21, 2011 - 5:42 pm
A long time ago in a galaxy far, far away. Well, with my affinity for Star Wars aside I’d thought I’d share my story on this board. I’ve been reading this board for a while now and discovered it by Google searching esophagectomy and am moved by what I read and have read. Fortunately, my story only started a bit of EC, which has now been eradicated. Enough with the introduction – here’s part of my story.
At age 37 in 2008 (with wife and three daughters aged 6, 4, 2 at the time) I had some stomach pain and a few mysterious episodes of chocking/spitting up. I visited a GI Dr. who then scheduled an endoscopy. I didn’t think much of it and actually almost cancelled my procedure. Well, wouldn’t you know it, the next thing I remember is sitting down with my wife and the Dr saying that I had a decent sized tumor inside the base of my esophagus with a little seeping into my stomach. He was 99% sure that it was cancer and suggested an aggressive treatment program in the future. He of course took a biopsy. The next few days were a whirlwind – I thought I had EC. Two days later he called back to say it came back NEGATIVE for cancer, simply a benign tumor. A scan the next day confirmed that no other tumors were present in my body.
Naturally, the tumor had to be removed and we met with a skilled surgeon in Fresno, CA (where I live). He explained the procedure and we were ready to rock and roll. I’m an elementary school teacher and this was in the summer. The first surgery was scheduled for August 15. The plan was to remove 1/3 of my esophagus and a little of my stomach and then reattach it. The first attempt at surgery was cancelled the night before because my blood platelet count was dangerously low. Had to go on Prednizone and have a bone marrow biopsy to rule out causes. That wasn’t too much fun but not terrible. I returned to surgery “go” status a month later. 45 minutes into going under I wake up with the anesthesiologist saying he couldn’t get the right breathing tube down my throat and had to abort the surgery. Really neat. My surgeon was really upset.
Fast-forward to Sept 28, 2008 and I finally had a successful laproscopic surgery. Everything was hunky-dory after the first four days: I was eating Jell-O and soup, pain was minimal and I was most likely going to be discharged later in the day when something bad happened. Really bad. After his morning check up, the Dr. on rounds had just checked up on me. Then all of a sudden I had difficulty breathing. I remember getting up and finding the Dr. at the nurse’s desk and told him I was having trouble breathing. Then I remember hearing something like “code red, code red, in room 14B” and having nurses surround me. The next thing I remember (notice a theme here?) is waking up in ICU with my wife and her best friend standing at the base of my bed. Apparently this was eight hours later. Tubes were coming out of me everywhere and I couldn’t speak because of the one jammed down my throat. I then had a writing exchange with my wife on paper which started with me writing “what the heck happened to me?”. We still have that paper. Well, that bad thing that happened was that I went septic and a leak started in my lungs. Hence not being able to breath. I spent 7 more days in ICU and then 7 more days in the hospital. Not a fun experience. Semi-traumatizing one could say.
I was finally discharged and arrived home with a feeding tube and two drainage tubes. I went into surgery at 205 lbs and came home 173 lbs. My wife was my caregiver and she was incredible. I was hooked up to a feeding machine at night and she administered my food and shots. After six weeks I ran out of sick time and returned to teaching – way too early. I could write approx 35,129 more words covering the next 2 ½ years of my life but I’ll spare the gory details. Basically up until July 29, 2011 my life was a living hell. It didn’t start out that way but turned into a nightmare. Once I started introducing food (after the feeding tube was removed) the vomiting and acid reflux began its fury. Again, over the course of the next 2 ½ years what was left of my esophagus turned to hamburger meat from all the vomiting and acid. I kind of had a routine – I would wake up, vomit black bile looking stuff in either the toilet or the shower and then off to work. Sometimes I would vomit in the car into a cup (30 min drive to work). I would often vomit in the trash can or outside of my classroom while in the middle of teaching. Sometimes I would vomit up to 16 times a day. First it would be the food I ate then it would turn into the gross, black stuff. I had a GI Dr. who would do endoscopies and would diagnose the same issue – esophagitis. Well DUH! Also at first, there wasn’t much pain associated with my vomiting, it was simply something I was starting to get used to. Then the pain started coming more aggressively. After months and months of continuous vomiting the pain turned massive. I think the longest period of time off I had from vomiting was 9 days – for 2 ½ years! There were many times I would scream in pain, writhing on the floor in the bathroom. I felt bad for my wife as she would try and help me but was caught up in a helpless feeling. My Dr. didn’t want to prescribe Vicodin because it “slows down motility”. So he had me take Tramadol which was pretty week. I've now had Vicodin on and off the past year or so and it's helped a lot. This pain affected so many areas of my life and I was starting to turn very angry – my wife, children, job, and every facet of my busy and productive life were effected negatively. I was a coach and high school youth group advisor as well. I was in survival mode most every day.
I can’t pretend to understand what some of you have gone through during chemo or radiation – or what you’ve witnessed as caregivers. I personally do not know someone close to me who has gone through chemo so I don’t know first hand what the ramifications are. I can only go by what I’ve heard and read on here. The personal stories here are tragic and don’t think I can compare the pain and suffering to my own. I don’t want to seem trivial because as of right now I do not have cancer.
I did go to Stanford on three different occasions for tests and met with a surgeon there twice during this time. At the time I didn’t feel 100% comfortable with the surgeon and did not elect to have a corrective-type surgery.
In May of 2011 my wife and decided to see another GI Dr. Best. Decision. Ever. She was extremely fast-moving and aggressive and wanted to find a solution for me. She understood what I was going through and wanted to scope me herself. Three days later after our first visit we had an endoscopy and afterwards told my wife that my esophagus was one of the worst, if not the worst, mangled esophagus she had ever seen. It bled very easily on contact and was severely ulcerated. I estimated that I had thrown up around 1,200 times since my first surgery and the damage was severe. She has said on many occasions that she’s not sure how I coped and survived the past few years of my life. She recommended a surgeon named Dr. Kelvin Higa, also in Fresno, who is a nationally renowned MIE surgeon. We met with him and one of the first things he asked us was “how’s your teeth?”. More on that later. He was very confident he could fix me and improve my quality of life. He likes the complicated cases and mine was going to quench his thirst for this. He had some ideas what he was going to do but wasn’t going to be fully sure until he opened me up and looked in with his own eyes. The main objective was to get me to quit vomiting. I was truly afraid that I was going to lose my esophagus if I didn’t stop vomiting and I was optimistic that the surgery was going to be a success.
July 29, 2011 was the day of the surgery. I felt this was our last hope to a better quality of life. There was no way I could continue my life at this rate. I was all prayed up and ready. About 15 friends and family members were with me before I was wheeled in. Well, the surgery ended up being “easier” than Dr. Higa first thought. Everything went very smooth and he was able to perform a pyloroplasty and a nissen fundoplication. After three nights and four days in the hospital with no complications I was able to return home. Obviously I started out on a clear liquid diet which I hated! After day four or so I wanted to throw the broth and/or Jell-O against the wall. Sound familiar? I healed up nicely but continued to lose weight. The day of surgery I was 162 lbs and slowly saw myself get thinner. I think my lowest I dropped was to 140 lbs about five weeks ago. Again, my wife and family were incredible during this time. School started August 14 and my wife actually took over my class as a full time sub! We couldn’t really take the financial hit at this time. It was a strange but exciting time to not physically be able to vomit! I went through bouts (and still do at times) of dry-heaving and spitting up whatever saliva was sitting in my esophagus but I happy to say that I’m now officially vomit free. I count my latest surgery a great success.
But sadly, as I mentioned before, due to the amount of vomiting and acid my teeth are now completely ruined. My dentist started seeing the erosion a little over a year ago and told me to brace myself for the future. At that time there were really no visible signs so I wasn’t too worried. But the last year has been filled with my teeth literally crumbling in my mouth. More than a few times I’ve been chewing my food only to have a chunk of tooth fall out and then spit into my hand. I have the teeth of an anorexic or meth addict to be sure. I have had eight total teeth pulled with two bottom teeth with the tops broken in half. The plan is for all my bottom teeth but three to be pulled this Christmas break, with two weeks to heal before some dentures/implants will be inserted. This whole entire teeth process has been quite painful and most likely I will have two other hurting teeth pulled this Wednesday. Insurance does not cover implants or dentures so all this will be out-of-pocket. Not fun to put our family in a financial hole. I’m hoping the entire implant/denture issue will be completed by Christmas time of 2012.
I didn’t plan at all to write this much but I think it’s been therapeutic for me in a way. Hope it wasn’t too boring and/or self-indulgent. It tears me up to read all the headache and pain on this message board and I don’t even pretend to say how I understand how you all feel. There have been times when I’ve wanted to die because of the pain and the loss of hope but seeing and thinking of my girls and family kept me going. I’ve had many, many bouts with incredible pain, suffering, and hopelessness but I can finally start to see some light at the end of the tunnel. My hope is that I can again be the husband, father, teacher/coach, friend, and God-pleasing man I was meant to be. I am so, so sorry for all your heartache and pain and can only offer my prayers and words of support. The support of this message board is unmatched in anything I have ever seen on the internet. Blessings to all.