My journey to where I am today began way back last summer. My mother was diagnosed with an acoustic neuroma which is a tumor of the ear that had grown into her brain (example, left). She underwent brain surgery last May and Drs. Benecke and Polinsky did wonderfully. The problem is that I was experiencing symptoms like hers. My wife and I became concerned and I finally went to see a doctor. I shuffled from one specialist to another until an MRI was scheduled. On December 2 at about 8 am I met with Dr. Kelly (a Ear, Nose, Throat Surgeon) who looked at my MRI and said, “it’s all clear.”
Well, we went on with our day. We had plans to meet my parents in Peoria for a Transiberian Orchestra Concert and by 3:45 pm we were arriving to pick them up for our fated evening. Unfortunately as we neared the parking lot to meet my parents I received a call from Dr. Kelly’s office. On the other end of the phone a stalled voice instructed me, “Could you please hold for Dr. Kelly?”
Dr. Thomas Kelly was calling me to explain that after reviewing the full MRI (not just the ear canals) and the full radiologists’ report, it was obvious that I had a mass in my cerebellum and needed to meet with a Neurologist at my soonest convenience.
Unfortunately it was 4pm on a Friday afternoon, so you can imagine that WebMD, Wikipedia, and our imaginations wrecked havoc upon us for the remainder of that weekend. Over dinner, after the concert and a lovely night with my parents we shared with them what little we knew and, now, the rest is -as they say- history.
Over those next weeks of December we continued to meet with my primary care doctor, neurologists, neuro-surgeons, and other specialists and began to better understand what exactly we were facing (well, we didn’t know what we were facing, but they were able to help us assemble a roadmap and plan the battle).
Now, we worked with an array of phenomenal doctors and staffs. I don’t know that I could pick a favorite or a best: for one thing, they all have their own areas of expertise… but I want to take a moment to testify about Dr. Fang Li of McClean County Neurology. She was quick to bring us opinions beyond her own, she was clear and direct, she spoke to us as adults and educated us along the way….and she was never afraid to say, “I don’t know, but I’ll find someone who does.” If you live in Central Illinois and need to spend some time with a neurologist, I highly suggest that you try to get in with Dr. Fang Li.
The only negative experiences we really had were indirectly related to our insurance. The United Methodist Church provides us with excellent insurance and when we would call the insurance company we never had any direct problems, but every doctor and nurse we spoke with would say things like, “Insurance won’t cover that,” or “your insurance won’t let you go there,” or “insurance can’t approve what you’re asking.” It turned out that these were all falsehoods for us, but we realized that there is a very real reason that doctors would say these things: these statements are far too often true.
These last few weeks have made us feel exceptionally fortunate for our insurance, our jobs and our supportive churches; but these last few weeks have opened up our eyes to the deep trouble our society has surrounding healthcare and the way patients are treated in the midst of troubles.
Enough of that. I don’t want to get all negative and cynical, especially in regards to something I can do little-to-nothing about, right now.
As Ray Owens left on vacation for a few weeks and I was trying to ‘hold down the fort’ for a few weeks at the Pontiac Church I finally got the call from Barnes-Jewish Hospital that it was time to come down for a consultation.
On January 19 I met Dr. Dacey who is Chairperson of Neurological Surgery and Co-Chair of the Department of Neurology and Neurological Surgery for the Washington University School of Medicine. He is, incidently (not to ruin the end of the story, I hope), the man who would eventually (and successfully) remove that tumor from my cerebellum.
One more important thing for you all to understand about my relationship with Dr. Dacey. It failed. I had the goal of making this very serious and buttoned-down neuro-god laugh. I was just sure that I could do it. I made jokes about “diddling interns in closets” (Grey’s anatomy) and my sister-in-law even asked if he had to wear a diaper during surgery, since it was a 10 hour procedure….but through it all, through each attempt, Dr. Dacey held firm and remained stoic and professional.
By the way, if that was the choice to make: between stoic and professional or jovial and silly. Well, I’m happy that I got the right guy!
One of the most exciting things which we learned from Dr. Dacey about this surgery (at least, the most exciting for a technophile like me) was that they would be using the latest in technology. (Carrie, my wife, likes to tell people that Dr. Dacey and his team just put it on autopilot and didn’t do anything else…but we know that isn’t true, don’t we, Dr. Dacey!?!)
First of all, On Sunday, February 5 Barnes-Jewish did a special MRI of my head using -what Carrie and I have termed “cyborg lifesavers.” The nurse had told us that we could have a nice dinner the night before the surgery so we made plans for Sunday night at a Bob & June’s fancy country club (Sunset at Gravois & 270). So it was a surprise when we went in for the MRI Sunday afternoon (before dinner)… they started shaving parts of my head. Then they went on to tell me to be careful because my “cyborg lifesavers” must remain in place until the end of my surgery the next day.
Needless to say, there were a lot of strange looks that night as people walked past us at Sunset Country Club… Well, the lifesavers stayed on. We enjoyed a great dinner with my in-laws, my parents, my wife, sister-in-law and sister! I looked like hell, but I enjoyed myself. Oh- and I didn’t care what other people thought about my alien-like appearance.
I don’t remember much about the surgery on Monday. Mostly that is because I was unconscious, but also, no one has really told me much about what happened. I know what was supposed to happen:
That special MRI which mapped my head got loaded into the computer / microscopes and then Dr. Dacey and his team could see what they were doing inside of my head with their fancy probes and tools. Pretty cool, huh? The surgery seemed to go pretty well and it might have even gotten finished in the 4-6 hours they had estimated, except that it turned out their machines worked perfectly and there was a little more to done, in the end.
Barnes-Jewish has this really cool new MRI right in the neuro-operating room called an Intraoperative MRI. While I am still ‘knocked out’ and on the table. You know, while it is still (relatively) easy for them to go back in and do more work on me, they run an MRI right in the operating room. With those funky cyborg spots all over me and with all of their computer technology they can see if there is anything they missed, if there are any other spots, if there is any unexpected bleeding, swelling, etc. How cool, right?
Turns out there was some tissue that they hadn’t gotten the first time around, so they went back in and continued the surgery in order to make sure that they got all of the tumor.
I have to tell you all, from the first doctor’s visit I had last summer, to this fancy equipment, to the expertise of my neuro-surgeon- I feel blessed –and not just a little bit lucky.
My primary doctor might have fooled around for two years. The doctors might have put off the MRI, or I might have ended up at a hospital where they don’t have the intraoperative MRI technology yet (and could have left part of the tumor). I mean, when one thinks of all the variables. When one imagines all of the possibilities: it is staggering.
After 10 hours face down on a table my face was swollen. After having my skull pinned into a halo device, I was sore and had bumps all over my head. After such a long surgery and with staples running down my head and spine…I was incredibly sore and tired. But do you know what? I am blessed beyond belief. There is absolutely no question about it. Through all I have endured these last few weeks, I know that I am a man of many blessings. I have a family who has stood by me; I have churches and pastors who sat with my friends and family, who sent me greetings, love and prayers; and I have in-laws who have graciously opened up their house, not just to me, but to a Shriner patient and her families over these past months to ensure that all in need would be cared for.
Sometimes we need to settle accounts. You know, put things in place: make sure our debts are paid, our actions have come together: We have to make sure that our checking account balances out. I wanted to give an “full update” from this past week, but I realized that with a week like this one, a summary of “goings-ons” just doesn’t do justice to the past days.
If you’ve been watching my videos, well, then you know there are countless people to thank and far too many “accounts to settle for this blog entry to ever end. I won’t even try.
I do want to make a couple of special thank yous for some people who provided special support to me and my family over these past weeks. First of all, Rev. John McIntosh has been not just a pastor to me and my family, but is now a friend and clergy-colleague to my wife and I. He was selflessly willing to take time away from a very important Clergy Covenant Session in order to sit with my family the day of my surgery and provide pastoral support and friendship to my family in one of our greatest moments of need. Rev. Stephanie Lendt is one of the pastors at Bob and June’s (my in-laws) church and, she too, made herself available throughout the day in order to provide support to the Berry family as they waited through that very tough day.
Now there are many other friends, colleagues, and family who stopped in, including my District Superintedent, Leah Pogemiller; directing pastor, Rev. Dr. Ray Owens and his wife; and Greg Weeks the Sr. Pastor of Manchester UMC. There were many people who came by during those next few days, but there was one group who really went above and beyond and I must name them especially. Upon hearing of my ordeal and finding out that I was at Barnes-Jewish in Saint Louis, Rev. Ed Hoke, Rev. Dr. Victor Long, and Rev. Jim Barnett rushed from Dallas, TX. Yes, that is right: Dallas! to be at my bedside (it is unclear, they may have been on their ‘way through,’ but let’s make sure to make them sound SUPER heroic). Upon hearing of my compromised state, Ed, Victor and Jim jumped into the car and sped through the South until they landed at my door. Ladies and Gentlemen: That is love, that is friendship. (That is also probably a load of crap, but I’ll leave that for you to investigate)
|I was high on narcotics at the time, but this is what Ed, Jim & Victor
looked like when they showed up at Barnes Jewish!
This has been a crazy few weeks and I’m sure you are wondering if I’ll soon be done rambling about it. In part, that’s why I’m trying to get this all out of the way with one massive “update,” but you also need to understand that these past weeks have had such an impact: positive in many ways, that you are still sure to hear much more about my weeks of sickness and God’s triumph in my renewed health. On the one hand: I’m sorry and I hope I don’t wear you out. On the other hand: sit down, shut up and read about my experience. I had a brain tumor so I get to be verbose!
For now, goodnight. I’ve eaten the last of the Oreo cookies and the milk is nearly depleted (Bob, I know how you like it when just one thing is left in a package, so I left the very last oreo cookie just for you).