Sorry for the long post yesterday and more so, sorry to leave you hanging. Before I get started, I want to say that GOD IS SO GOOD!!! What? It’s raining like crazy outside, and I have undiagnosed tumors! What do I have to be thankful for? You’ll find out soon!!!
So in terms of time, we are now at August 31, 2010, and I just learned from the Doctor who saw me on my 4th emergency room in only two weeks, that I have two tumors and some kind of crazy thing in my back that rot’s the spinal cord and has no cure… and now I have to tell my wife.
So there I am… a total mess, basically telling my wife that this is it and I’m a goner!!! The first thing out of her mouth is “WE ARE GOING TO BEAT THIS!!!” How? I thought- WE don’t even know what “THIS” is and besides, one of “THE THINGS” that WE are going to beat doesn’t have a cure. So I really thought all the wrong things I had done in my 38 years were coming home to roost, and this was the beginning of the end. I could not have been more wrong, but we’re not at that part of the story yet, so back to the “BATTLEFIELD”…
So the next day, September 1, 2010, I had a follow up with the specialist that had ordered the MRI’s. When I asked about the Syrinx Formation (Google It), she said, “I have never heard of that”
I said, “YEAH, IT ROT’S YOUR SPINAL CORD, AND THERE IS NO CURE!”
She simply said “WOW!!!”
She said she would send me to a specialist to talk about that, which ended up being an Oncologist (C#N&ER Dr… we don’t say the C word.) But before that, she wanted to test the Neurological response of my left arm. For those that don’t know, this process is call an EMG, and they put needles into you’re the nerves in your arm and blast it with an electro-charge and measure the time it takes you to scream…Pretty much. Really, they are looking to measure the time it takes to make your arm FREAK OUT, and yes…it was super painful even for a guy with PAIN THAT WAS A 50 ON A 10 PPOINT SCALE. The test results were never shared with me, and I found out later they charged my insurance $1295 for this “SUPER IMPORTANT TEST”
The next step in my “DONUT” of medical care was my first visit to the Oncologist. As he learned of my condition, he said, “WHY DID THEY SEND YOU TO ME, I’M A C#N&ER Dr.?”
I said “I have no clue, but hey what about this Syrinx Formation in my back? What do you know about that?” I should have known the answer…Wanna guess what he said? Yep, you guessed it. He said he knew nothing about it. In fact, he said he did not even recall it from medical school. So now here I am explaining the same thing again. “IT ROT’S YOUR SPINAL CORD AND THERE IS NO CURE” Again, the doctor sitting in front of me was clueless about my condition. He was sure that the area was extremely risky to perform a biopsy, so his thought was, he would just refer me to someone else and that surgeon could just go in and grab it. However, one thing that he was good at was prescribing pain medication. Can you say Oxycontin? I can…and I was… to the tune of about 200 mg a day shortly after that visit.
So here I am, I have two tumors, a thing in my back that rot’s your spinal cord and has no cure, I’m taking 200mg of Oxycontin a day, and I’m still not able to sleep because the pain was so severe that I was taking about 3-6 SCALDING HOT BATHS a night to relieve the pain. In addition, they were giving me Morphine & Dilaudid. Even that was not keeping me from my nightly ritual. Sleep… wake up in 45 minutes… take morphine and a hot bath, rinse and repeat about every 45 minutes to an hour. In the meantime, I was still trying to juggle work, being a husband, being a dad to my sweet little girls. My oldest of which said that she could not “marry” me because I had to go to so many doctors… I’m laughing and crying at the same time, as I type at this very moment!!!
The following week, I was in front of the Cardiothoracic Surgeon that I was referred to by my Oncologist. I had to ask him the question…”WHAT ABOUT THIS THING IN MY BACK?” Second verse same as the first…he had no clue. What he did have was a little strategy. His angle was to make me feel comfortable by “TAKING CONTROL OF MY HEALTHCARE” in his words. This is great news we thought….I mean finally, someone that is going to see us to the finish line and not just pass us off. His strategy was to assemble a team that consisted of a Neurosurgeon for tumor # 1 in my left shoulder, a general surgeon for tumor #2 on the right side of my neck, and led by, him…to support on the Cardiovascular side. It all made since, and we THOUGHT we were heading in the right direction….BOY WERE WE WRONG!!!
So after a nightmare scheduling the appointment with the first leg of the “Dream Team”, the Neurosurgeon, we were starting to ask…”Why are we having such a hard time getting some help?” It was like something was working against us…Not quite- Something was working for us by not letting us get any peace until I had learned THE lesson from a “Certain someone that died 2010 years ago”… More on that later!!!
The following week it was “GO TIME” with the Neurosurgeon. There we were…filling out the same freaking paperwork we had filled out the previous 6 or so times. After our normal 45 minute wait, we were called into the patient room. After a normal 15 minute wait, the nurse came in, and I gave her the details and then she was gone. I had to hit the men’s room , so I opened the door and the doctor, his assistant, and what appeared to be an intern were there reviewing my MRI’s. “Excuse me,” I said as I slipped past them heading to “handle my biz”. When I returned they were still there, and as I tried to slip past again, he said “No please, let’s talk about your films.” He pointed the tumor on the right, which I was having ZERO pain from and was talking about how small it was. I interrupted him and said, “No Dr. I’m not having issues with that one; I’m here to talk to you about the one on the left.” As soon as I finished, he went back to talking about the tumor on the right. I interrupted him again and said “Excuse me doctor, the General Surgeon will go in after that one; I’m here to talk to you about the one on the left.”
He said “Well, I was just about to say, it’s only an inch. You should just leave it in there, and the one on the left is small as well…you should just leave that one in as well…and the thing in your back…no need to worry about that thing either.” Needless to say, I was freaking out!!!
I said “NO…NOT AN OPTION…I’M HAVING LEVEL 50 PAIN AND I’M ON TON’S OF MEDS…IT’S HORRIBLE.” You will love this…. He said, “Wow, you really need to get that thing out of there, and I think I have the perfect guy. He’s at LSU Medical School” I was blown away!!! Not only had the MD said “LEAVE THE TUMORS IN” now he was referring me out of state. I started to collect my things, having heard enough and told my wife, “Let’s Go!!!” As I was collecting my things ,I asked the Doctor for the phone number for the guy at LSU, just as a gesture…I had no intention of calling him. He said “Oh, he’s not practicing medicine any longer. I was thinking you could call him to see if he knew anyone.” We were just as blown away as you are reading this. It should be no surprise that we walked out.
Now it’s September 14, 2010, and we are right back to square one. With a ding dong like the Neurosurgeon being referred by the Cardiovascular guy, we now decided to drop the Cardiovascular Surgeon and try our luck again in the open market.
That, my friends, is where I am leaving it today…I hope to wrap this up tomorrow…at least I hope to get it to the lesson I had to learn, the way I learned it and caught up to daily events in my crazy world of DONUT MEDICINE.
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