I Have this Feeling…in My Gut.

For a few days I had noticed some pain in my abdomen, but they were fleeing.  On the twenty second of December, I began having more severe pain on my left side.  My doctor’s nurse practitioner had a last-minute cancellation and I left work early and went straight down to my doctor’s office.  The pain had subsided a bit by the time I got there and the pain was on my left side.  The nurse diagnosed me with diverticulitis and gave me a prescription for antibiotics.

I started feeling better and within a week I was feeling pretty good…until I finished my antibiotic regimen.  On New Year’s Day I began having some pain, again.  We went to an urgent care doctor.  Because of the diverticulitis diagnosis, they suspected it was probably something I ate. They sent me home and told me to see my primary care doctor.  After a few days I got in with my doctor and he sent me for a scan.  My appendix was mildly inflamed.  The antibiotics from the misdiagnosis of diverticulitis had reduced the inflammation, and he recommended a more aggressive course of antibiotics for the appendicitis.

If you are like me, you haven’t heard of treating appendicitis with antibiotics, but it is a real thing!  Here is a WebMD article that shows 80% of patients may find medicine effective rather than surgery. Apparently, this has been a standard practice in Europe for some time, now, and America is just coming around to this standard of treatment.

I consented to trying the more aggressive course of treatment and got started right away (Friday).  At 3:30am on Saturday morning I woke up intensely sick.  I got to the bathroom, somehow, but I was nearly incapacitated with nausea, intense pain, and my head was spinning.  Though my wife had left town for the weekend, luckily, I was not alone! My mother drove up to stay with me because my wife was concerned for me.  Carrie is so wise!  I yelled for my mother to call an ambulance.

Thankfully, the ambulance was quick to respond.  They were great.  They got me down the stairs, out of the house, out through the cold and bright flashing lights, onto the gurney and rolled me into the back of the ambulance.  I thought to myself, “the whole neighborhood is awake watching this.  How embarrassing!”

I was rushed to OSF Saint Francis and proceeded to sit in the Emergency Department for hours.  Good thing my appendix didn’t burst!

Once I got to a room in the Emergency Department, the doctors didn’t know what to do with me.  They would not or could not look at scans done by another hospital system and the doctors wouldn’t call to consult with my primary care doctor.  It just so happens that the doctor on-call for my primary care doctor’s office called me to check-in.  I put him on the phone with the doctors at St. Francis.

One doctor came in to say I had appendicitis and was going for surgery and then another doctor came in to say that I didn’t. Then a surgical resident came in to talk to me about my ‘pending’ surgery and then a GI doctor came in to tell me that there would not be surgery and it was not appendicitis.  I felt like a ping-pong ball.

I was admitted to the hospital and they kept me off food and ran some tests.  Worse than boredom is boredom with a completely empty and loudly growling stomach!  They never sent me for scans, but instead they watched my vitals, ran blood panels and tested my urine.  I’m so frustrated that they haven’t really consulted with my primary care doctor, as far as I know, or even looked at the scan taken on Friday.

I was discharged by the hospital on Sunday with instructions to come back and have an appointment with an OSF GI specialist.  I already have an appointment tomorrow with a GI specialist over in Bloomington (that appointment was set up when I saw my primary care doctor on Friday).  I just hope this specialist can figure things out and give me a diagnosis.

It’s bad enough that I don’t know what’s wrong with my GI tract, but on top of it all: I was hospitalized on a Sunday morning.  But it is worse than that, even.  This was the week I was supposed to preach a sermon for my doctoral program!  Luckily, I have an advisor who will understand and colleagues that made sure my pulpit was covered.  Rev. Lori Bultemeier immediately offered to preach and lead worship so that I didn’t have to worry about anything!

Thank you, Lori!

Nuts & Bolts

Alright, I’ve spent a lot of time talking about my ideology of communication.  Yes, some of it is dated, but I want to move on.  I want to write a bit about the “nuts and bolts.”  I want to inspect more specifically how we put good communication into practice.

Over the last few months I have started an experiment by accident and I think we can learn something from it.  Let me tell you:

A few months ago I was in an unusual situation.  My church had decided to make major staffing changes, so I knew I was moving.  I went to the doctor and found out I had a brain tumor, and then my senior pastor went on vacation for a month.

When I went in to talk to my District Superintendent (the pastor who supervises my district of churches), she shook her finger at me and told me that I needed to communicate VERY CLEARLY and often with my church.  My job, she reminded me, was to minimize anxiety and keep the church informed.

She was right, but also I didn’t want my wife burdened during (and after) my surgery with lists of people to call and email, nor did I want her to feel inundated with calls when she was going through a lot.  Hmmm.  Well, Facebook, Twitter and my blog turned out to be the solution.  It was perfect because friends, family, church family, and even the people who weren’t yet on facebook could stay connected to my progress without much effort on my wife’s part.  We ended up starting a new blog and by the end of that month we had over 6000 hits.  It was a great success.

It was an accident, but  it worked beautifully.  It wasn’t just information, it wasn’t just what happened, but it was about how I felt.  Perhaps more importantly, it wasn’t just words but also video and pictures.  It turns out that I finally did all the things I’d been expounding on this blog for so long!  I was using social media to build relationships.  In the process of authentically expressing myself, I was sharing my life and faith with a larger audience than I preach to each Sunday.  How cool is that?  It was an accident, but I was actually doing the mission statement of the church… perhaps even more effectively than on Sunday morning.

Up-close and Sort of Personal: the Pathologist’s Report
View of a Pilocytic Astrocytoma

The past few weeks, Scott has been doing a great deal of blogging but I have been sort of MIA. I’ve felt like I was so busy running from one task to the other that when I sat down; well, I just wanted to sit. This morning I realized that my blogging was not the only thing over due, we had also failed to share with many of you about Scott’s doctor’s appointment Tuesday at which we got the results from the pathologists examination of Scott’s tumor. Now, Scott is convinced that blogging should be relational and emotive in content rather than informational, so I’m giving all of you the warning that this blog is most likely going to be more informational in content as I want to explain to you how the visit went and what the doctor said, answering as many questions as I can along the way. Later, when I have some more time perhaps I’ll share something more relational with you all 😉

Anyway, as I said, Tuesday Scott and I went to meet with Dr. Dacey to get his staples out and for a follow up. Dacey was very pleased with how well Scott was doing (of which I had no doubt); he did his whole battery of fancy neurological tests: walking in a straight line, running your foot from your knee to your ankle, touching your finger to your nose and then the doctors finger, standing with you eyes closed ect. Scott passed them all, and Dr. Dacey declared that he saw no neurological effects from the surgery, which means that his brain seems to be working just like it should be.

Dacey then went over the reports from the pathologist. The short story is that he thinks that Scott had a benign Pilocytic astrocytoma and that he needs to get MRIs in the future but nothing else. We are very happy, that is good news.

 If however, you want to know more about what that all means, here is the long story:

When we first met with Dr. Dacey a couple of months ago, he said that he thought that this was most likely a slow growing glioma. A glioma is any tumor that grows from the glial cells, which are one of the types of cells in the brain. Glial cells make up the non-neurological parts of the brain. That is, they do not transmit information but give structure and support to the brain so that it can do everything that the brain does. For more on gliomas. Now, where it gets kind of confusing is that there are  many different types of gliomas.  It’s like the soup aisle at the grocery store.  If I just asked Scott to go pick up some ‘soup,’ who knows what I’d get back from County Market! Just as we know what kind of soup we’re eating because of what we find in the soup, so too do doctors categorize tumors based on what makes up the tumor (ie. the types of cell, structure and how quickly it seems to be growing).

After they removed Scott’s tumor, they sent it to the pathologist, a type of doctor who cuts up the tumor, and studies it under a microscope. The pathologist concluded that the tumor is what is called an Astrocytoma, a type of glioma. (Of course there are many different kinds of astrocytomas just as there are different kinds of chicken soup.) So we will continue to get more specific as we progress-o. These are the tumors that grow along a type of glial cell called astrocytes. Astrocytes got their name because they look like stars. They are most commonly found in the cerebellum (the area of the brain where Scott’s tumor was and in the spinal cord). Astrocytes support, or keep alive cells that line blood vessels in the brain). Though there are many different kinds of astocytomas, the good news is they do not typically spread out side of the brain, meaning they don’t usually metastasis causing tumors in other organs. For more on astrocytomas.

An Astrocyte
Dr. Dacey and the pathologist think that Scott’s tumor was what they call a Pilocytic astrocytoma. For more on pilocytic astrocytomas.  This is one of the slowest growing of the astrocytomas, which means that of all the different kinds of brain tumors Scott could have had, this is one of the better ones. (We lucked out). These are usually considered benign (non-cancerous). The biggest concern with these is that they can become large, causing damage and problems. We were lucky because we found this before it caused symptoms and real damage. It was small, remember we found this accidentally. Because of all of this, and because of Scott’s age, Dr. Dacey is of the mindset that there is nothing more we need to do; he does not think that Scott needs any radiation or anything of that sort.

Now, when the pathologist was looking at Scott’s tumor, it looked a little different than most pilocytic astrocytomas. There is a kind of fiber they normally find in these tumors called Rosenthal fibers, and his tumor did not have many of them. Now of course when they classify tumors, this is not always as much an exact science as we like to think, just as sometimes its hard to tell the difference between chicken noodle soup and chicken and dumpling soup (one can morph into the other as its noodles become bigger). Dr. Dacey did not seem concerned about this, but he did say that he would present this to his tumor board. So, he will take all of these findings and discuss them with all the other doctors in his department to make sure that they are all in agreement. This means, that rather than getting a second opinion, we will get 10 opinions all working together. When we have our next appointment with Dr. Dacey he will tell us how this discussion went. Scott will also have another MRI in 6 months and then most likely every year after. This is all very good news for us.