What does it mean to start over? When it comes to a cake, you have to trash the whole burnt mess and start with all new ingredients. Luckily starting fresh in life doesn't have to be so violent (or messy), but it can be. Sometimes we have to lose our lives in order to start over. Jesus said something about that in the Bible, in fact....
For me, starting over wasn't an obvious thing. I didn't even realize it was happening nor did I have that intent. Yet, over the last few weeks I've come to realize that I look at certain things differently. My worldview has shifted ever-so slightly.
I notice it in things as simple as my sleep schedule. Over the last few months I've been going to bed earlier and getting my day started sooner. Is it because I look forward to what tomorrow holds?
I notice it in my attentiveness to my wife. I don't know if she notices, but I'm a little more aware of what is happening for her, although a new church appointment has kept me from investing more time in my marriage.
I notice it in my outlook on issues and, even, moments of "crisis" around me. I think the experiences of a brain tumor, two neuro-surgeries, and a near-death experience in my hospital bed have changed my world in ways I didn't even realize... somehow for the better.
I don't think you will notice the changes I have experienced. I don't think it is in overt ways, necessarily, but it happened all the same. As a pastor, I look around at the world and wonder...is that what faith does? When we begin to see that there is hope and love in this world, does it change us? I think so. We don't always notice the change right away, but when we see the world through the lens of possibility instead of impossibility...when we see that this world is more filled with love than hate...when we recognize that God can give us hope for a brighter tomorrow...I think it changes our world and us a little at a time.
So, Wednesday evening I was introduced to my new nurses and was settling into my space (my wife was actually the one doing the ‘settling,’ I was doing the ordering). Finally my wife left to go to her parent’s house and get some sleep and I laid back and fell off to sleep. I woke up needing the restroom, so I sat up on the edge of the bed and got ahold of my urinal. Something didn’t feel right though, when I pulled up out of bed. I put my hand behind me to feel the lumbar drain and I felt a string (It was later confirmed that this was the smaller tube from the lumbar drain that should have been under the plastic dressing). I called for the nurse.
Now, before I explain what happened, I have to tell you that, every since the surgery I had been paranoid about that lumbar drain. Every 5 minutes I was asking the nurse to check that the drains were turned off or that the dressing was alright and not leaking. I think most people can understand how I would be a little paranoid about this thing I didn’t expect, didn’t want, and this thing that can kill you...
So, back to the story! I called the nurse and said the lumbar drain dressing didn’t feel right. She said, “I’ve found someone more OCD than me, I think!” I said, “Yes, but will you please look at it?” Of course she was glad to look at it and came around behind me with her little light... She ended up leaning in really closely to the dressing, because I could nearly feel her breath on my back and from back behind me she quietly said, “I need you to stay very still and I’m going to call the on-call surgeon.” I asked if everything was okay and she said that she didn’t know, but she didn’t think I was in any danger if I just stay still. She hustled out of the room and I could reach my phone so I called Carrie and told her something was up. She didn't arrive until everything was finished.
It was a very simple procedure. The surgeon did a great job simply re-dressing and re-sterilized everything and since we became aware, right away, that it was exposed I was never in any serious or imminent danger. Once everything was sterile and under a plastic dressing again, I was ready to go back to sleep.
Carrie stayed at the hospital the rest of the night, since it was after 2:00 a.m. by then!
I’m exhausted, but I’m feeling pretty well right now, tonight. I thought I would blog a bit and, as I looked back, I realized that I’ve never actually told “the story” of what’s been happening, really, since getting to St. Louis.
So, first recap of my last surgery:
I had a benign (didn’t know that for sure till it came out) tumor in my cerebellum. They came in from my neck; cut my neck muscles away and held them away from my body; and cut out a piece of my skull. They next opened up the dura (sp?) which is the membrane around the brain and then used probes to go into my cerebellum and resect the tumor which was in the left hemisphere of the cerebellum kind of near to my spine. Then they closed the dura and skull (which I don’t remember how they explained it, except we now know they use titanium screws to put the skull back and once everything was put back into place they used staples to close the incision which was several inches up the back of my neck.
Now, I recovered pretty quickly for the first few weeks and then had setbacks with a couple bouts with -what we thought was- flu. Even after the flu, I felt as though I had progressed, but starting about two weeks [before I ended up back in the hospital] I began having more bad days than good. We’d always had bad days and good days, so, until we had the benefit of hindsight, we didn’t realize things were actually getting worse.
Well, they were. During the week before I went into the ER I had only bad days and ended up nauseous often. Wednesday before I went the ER I woke up throwing up at 5 am and didn’t stop until noon, but by noon I finally got relief and slept the rest of the day. Thursday and Friday were miserable and I still had migraines, but I wasn’t throwing up and we had called the doctors, none of which thought this was necessarily unusual after brain surgery...
But on Saturday I woke up vomiting in the early morning hours, had the worst migraines I’d ever had and it wouldn’t stop and probably wouldn’t have. We called my surgeons around 11 or maybe 1 and they said if it persisted to go to the ER, so around 4pm we headed to St. James OSF Emergency Room. They were very good with us. You can read that account in DAY 1 - The ER In Pontiac
Once we got to St. Louis and were working with neurosurgeons and not just an ER doc, we were still afraid that they would look at us and say, “Um, you just had brain surgery, there’s nothing abnormal, go home and take some tylenol.” Are you seeing a pattern? And by the way I hadn’t been able to keep water down since Friday night and had eaten nothing since then either. They looked at the CT’s from Pontiac and the on-call Neurosurgeon asked us some questions and let us tell the story of how we got there (and listened to our questions, anxieties and fears) and then explained it probably was not a fresh brain bleed like Pontiac thought it was, but there was definitely some fluid and if fluid was flowing in and out of dura/skull around the surgical site, there probably was some bleeding as a by-product of this activity. The migraines, then, were being caused (and then getting better briefly) when that spinal fluid would leak out of the brain membrane and skull out under my skin. The brain, then, didn’t have enough spinal fluid pressure and I’d have migraine and then my brain would produce spinal fluid to compensate, but with more pressure that would all leak out and form large pockets of fluid outside the brain and it would happen all over. He also explained where my other headaches (which I had described) were coming from (with detail) and explained that they wanted to do a surgery to correct the structure of the brain where they had done the surgery in order to make sure the spinal fluid was draining from the gland that makes it, down through the brain as it is supposed to. He used the metaphor of a kitchen sink. If you set it running at a certain speed and have the drain open it will just continue to drain properly, never emptying and never overflowing, but if you stop it up, or somehow open the drain wider, it no longer drains as we want it. We really thought Dr. Beaumont was just great. You can see him, later, shaving my head in this video:
So now, I hadn’t eaten since Friday and it was Monday, so that was really the first thing on my mind. I finally got to eat something! (On Sunday they wanted to wait until the MRI results were gone-over to make sure I didn’t need emergency surgery that night before they gave me food) Now, on Monday morning I got to eat breakfast. It was gross by any normal standards, but when you haven’t eaten in several days, even greasy, rubbery eggs and sausage at the hospital will bring you delight :-)
Late on Monday morning Dr. Beaumont (that same on-call surgeon) brought in syringes and had me lie down on my side and drained as much of the spinal fluid as he could which had been flowing into other cavities and creating pockets of fluid where we didn’t want them. It sounds as though he drained a whole lot of bloodly spinal fluid.
I still got to have some nasty lunch and dinner and they explained that my procedure would be on Tuesday, sometime. My surgeon was out-of-town at a conference, so I was being fit in with Dr. Dowling (I think he moved / cancelled his own surgeries) to fit me in Tuesday at 1, because he was filling in for Dr. Dacey’s service, in case emergencies like this came up.
The surgery was Tuesday in the early afternoon, but while they expected this leakage had created a bit of damage to the dura as it flowed in and out, they were not prepared for the severity of damage.That spinal fluid had “shredded” the dura all around the incision point. I guess it was far worse than they thought and they had to put in a lumbar drain which had been “a very remote possibility.” It wasn’t so bad that they couldn’t put the skull back together (they said there was an even more remote chance they may have to use a wire mesh), thank GOD!!!
The surgery to correct the structural problems [stemming from the original surgery] was really a repeat of the first surgery, except they didn’t have to go through the dura into the brain. They simply went into the skull, removed it, repaired the dura and then worked backwards repairing structures along the way.
The problem is that, because it was so severe, we could do all this and have all the same trouble, so they needed, in this case, to put in the lumbar drain to keep that from happening. You see, the brain is capable of producing 30 mL of fluid every hour. Well, we don’t want too much fluid pressure or it might seep through the incision site again and we’d have the very same problem.
So they open a hole in my lower back, insert a shunt into my spine with a small tube (looked like a small string) coming out and hanging out of the hole. They they take... welll, I don’t know, think about a plastic sheet a little thicker than a latex glove material, but the same consistency. They took a sheet of that and sealed over the whole hole (with the whole in the middle and then they use those sheets to completely cover my lower back so that it formed several layers and then taped all around (an aside: think about sleeping for days wrapped in plastic wrap. Not cool.
That small tube sticking out from under the “medical grade, glued down, ‘plastic wrap’ connected, then, to a hub which then connected to a thicker tube which ran down to a contraption on a pole. I had to trust the nurses to be attentive and drain only 10 mL each hour. There were several valves which had to be carefully turned on and off, but I became very nervous when we asked about the side-effects. They said it was unlikely, but the possible complications were, if the site became “exposed,” infection; or if too much spinal fluid leaked out there would first be queasiness, then a severe migraine and, finally death. This is what we definitely didn’t want to have happeni!
Well, that gets us through an overview of the first and second, corrective, surgery as well as some of the complications that could arisel
After the procedure Tuesday I did great and that takes us to my mext blog on the day from hell: Wednesday!!!
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.
So it was a really great day. We had lunch with some friends downtown in St. Louis, but by the time I got back to the berry's I had hit a wall and-when I sat down for just a second...I was asleep for 4 hours. Apparently I needed it badly.
How'd I get her confused with Charlie?
Carrie's cousin brought her little girl, Amelia, over. Amelia came in and tried to wake me up and say hello and apparently I just kept say, "Stop it, Charlie. Go away, Charlie!" Too funny. The bad news, is that the recliner is semi-broken and falls way back when you sit in it, so I slept those 4 hours with my legs over my head and I was kind of a mess when I woke up.
I mean- it's all good. I'm on heavy narcotics for my pain, so I can't drive anyway. Carrie did all the driving to Pittsfield tonight and once I had my meds and got to moving around with my cane... well, I did fine.
Alright, so as usual, it is the middle of the night and I can't sleep. I don't know what is wrong with me. It isn't the pain. My meds are on schedule. I think that it is just very tough, right now, for me to turn-off my brain -even when it is exhausted. I guess during this past week I've just pushed through until I crash and that is what gave me the sleep I needed. Tonight. I'm taking a long hot bath, reading a little and I'm going to go back and try this 'sleep' thing again. It's going to work.
Oh- there is a connective cute-factor.
I guess all these sleepless nights could have SOMETHING to do with the fact I'm taking naps all throughout the day whenever I get tired and then sitting up half-the-night with no sleep. Well, for now, blessings and goodnight! I'm determined to sleep soon!
PS: Keep your eyes peeled. Carrie has a blog posting on its way first thing tomorrow. I mean- by "first thing," I mean to say: Whenever we finally bother to wake up, have coffee and breakfast and eventually find the energy to do something productive. Lately, we've not been very productive before 10 am!
