The view of Santa Cruz de la Palma from our stateroom.
Last night we enjoyed dinner at the Pollo Grill up on Deck 14 at 8pm. It is the steakhouse onboard and I had a Lobster Bisque, salad, and Veal chop with potatoes. Carrie had a goat cheese & beet starter, lobster bisque and a local Madeiran fish dish for her entrée. After dinner we had intended to join Andrew and Katie for drinks, but time and energy caught up with us and we found ourselves very tired and in bed and asleep by midnight.
Today was an unplanned day. We weren’t signed up for a cruise-line excursion and we hadn’t made detailed plans. It was a nice relaxing day at a port of Santa Cruz (a small town) on the Island of Palma. Santa Cruz de la Plama is a Spanish port (and, therefore, Island) of the Canary Islands. Without major palaces, forts or Cathedrals to tour, AND since it was only a five minute (if that) walk to the city center: It was the perfect day to be unscripted and relax!
The municipal market at Santa Cruz de la Palma
Each couple: Ken & Trish, Bob & June, Andrew & Katie, and Carrie & I went our own ways to spend our time, today. Carrie and I were looking for scenic streets, alleys and lookouts for photos and found ourselves climbing steps (photo left) and going up steep streets to find photo opportunities, stopping by the municipal market along the way. When we came back down to the city center we ran into Katie & Andrew who were sitting at a café. Katie pointed Carrie towards a jewelry store. We did our part to keep this island and its local jewelry maker prospering. When we left the quaint little jewelry shop, we ran into Katie and Andrew, again, at another restaurant so we had lunch with them. By now it was 1pm, or so, and Andrew headed back to the ship.
Moments later, while we still sat at the café, Bob and June happened upon us and we all enjoyed food and drink together. Carrie, Katie and June went on for more shopping and Bob and I headed back to the ship.
And, now, we are all safe and sound on the ship and headed back out to sea.
Yesterday was a terrific day with tours, relaxation and some time exploring on our own. Really this cruise thing has been a better mix than I thought it would be. This morning we came into port around 6:30 or 7am. By the time our coffee and english muffins arrived and we moved to the balcony (at 7:15am) the ship was just finishing docking.
Carrie and I enjoyed some toast / muffins and tea / coffee on the balcony thinking that we would go eat in one of the on-board restaurants later, but, you know, by the time we had a little something and got ready for the day, there didn’t seem to be a point. I think we’ll survive until lunch, though... :-)
Carrie just finished getting ready and now we’re heading out. When we signed up for excursions we decided not to sign up for a Cruiseline planned excursion here in Valencia, so we are striking out on our own. The ship leaves at 4pm, so we have to be back by 3:30pm and can spend the rest of the day reading and relaxing by the pool.
I hope that all is well for you...wherever you may be as you read this blog!
4:00 pm:
We’re back! It was a great day, for sure. I was grumpy this morning because I had not slept well last night. It wasn’t a comfort thing... i was just amped up. Anyway, most people who know me well will know that I get grumpy when I don’t sleep enough. So, I think Carrie and I argued all the way to Historic Valencia, but, I quickly got over myself and we had a great rest of our day.
A church tower at Plaza Lope De Vega
Our first stop was the Plaza Lope De Vega. Then we walked to the Cathedral and Basílica, but decided that outside was enough for us, today. We had planned to go to the Mercado Central (Central Market) but got a report from Bob and June that there were no longer vendors there (it had been converted to coffee shops and restaurants). We decided to pass on that.
The Cathedral (above) and streets nearby (below)
The argument earlier that day was because iI wanted to go see the Cuidad de las Artes y las ciencias (City of Art and Science) which is a complex of museums in Valencia. It caught my eye because of the Aquarium where they have and underwater observatory where you walk under the water. Well, we had time, so we headed out in a taxi for the museums. Once we got there we enjoyed a walk to the aquarium, but it turned out it was €30 which is about $40 (?) per person. If we could have just done the underwater walk or if it had been less expensive we might have done it. But as it was it would take about 3 hours and we just didn’t think we had the time if we were going to enjoy our lunch and get back to the ship with comfort.
A view of the museum campus in Valencia
In the end the time, expense, and exercise we got on the way to the museums paid off by the sights we saw. The buildings were stunning and we enjoyed walking through the parks nearby. If we had to do it again, we would...it’s just that we would allow time to go through the museum, too. Maybe we would plan a day just for the museums on a return trip.
We caught a taxi to lunch. Katie and Carrie had found a restaurant out in the countryside that was well-known for their paellas, so we met Andrew and Katie outside of town at this country restaurant. It had been written up and, then, made further famous when Gwyneth Paltrow and Mario Batali ate there.
We also enjoyed our meal. It was delicious and worth the cab fares for certain! You can take a peek at our meal, too:
We got back to the ship with plenty of time to spare and we are now getting set to relax. Carrie just headed up to the pool, so I will leave you all behind and follow after her!
There was briefly an alarm going off on-shore...I hope they didn’t mistake us for pirates ;-) Actually, it was a perfect and uneventful morning, but now we are bustling around a bit to get ready and be in the lounge where we are expected for our first excursion of the cruise. It is called “Panaramic Valldemosa”
If you would like to learn a little bit more about: Mallorca, Valldemosa.
2:15 pm:
We couldn’t remember exactly what it was we signed up for (a month ago), but it turned out to be a relaxing trip up into the mountains just seeing the sights. This is different than past Bob & June Berry vacations. They usually have a car and more freedom to get away from the crowds, so Carrie and I were a little worried about this trip. Even though we rushed past several sites (and leisurely walks) we would have liked to take in, our destination was a great, old, monastery that sat in a picturesque village.
On the way out of Palma we passed a seemingly amazing cathedral, which would make a great stop in Palmas on another trip and saw a very enjoyable path along the ocean, should we ever get back here.
Anyway- Once we toured the monastery, Carrie and I got away and walked around the village on our own and ended up back near the monastery at a little Café. The highlight of my trip so far was being able to order for Carrie and I (Carrie was en los banos) in decent-enough Spanish. Alright, the waitress knew English perfectly well, I’m sure, but I still accomplished something. Go Me!
I was wearing out. Carrie, June, Andrew & Katie all went on into Palmas de Mallorca to have lunch at a renowned Michelin-Star Tapas restaurant, but I was too tired. I knew I was going to hit my wall and ever-since my surgeries...when I hit it, I’m done. I wanted to be sure to be in the comfort of the ship when I got to that point, so here I am writing this blog and then heading up for lunch with Bob, Ken & Tricia.
In the photo above you can see my incision that it is now beginning to heal. The trauma of getting that scar, twice, now, was extreme and, as you have read in this blog, I have many memories, both traumatic and good, from my time in recovery (both at the hospital and, now, at the Berry's home). It's crazy how this scar can be fading so quickly when the experience still feels so fresh.
I feel the scar and the people around me see it. It is a constant reminder of these complicated memories. Yet as the physical wound heals, fewer people now say, "oh my, what happened," or, "how did u get that scar?". The physical scar is less noticeable and far less commented on, yet my wife and I (& other family members) will always carry the emotional scars. My wife will always see the scar, whether actually visible or not, when she sees the back of my head. For my part, I will always feel the scar. Fortunately, we have a God who understands the memory that lives in scars.
We talk about Christ being on the cross, but that experience came with significant scars. Hanging on the cross, from the outside, seems like a wholly terrible experience, but that terrible moment was proceeded by a life that brought many blessings. The scars of Christ were not just a negative memory, but a reminder of the loving acts committed by Christ, as well. The scars of Christ are reminders of the good that came out of a bad situation.
I think that all of us are confronted by scars sometimes. We all find troubles that leave marks on us whether physical marks or emotional. It is up to us whether we will dwell on the passing negative experience or whether we will find good in the midst of angst and trouble. Christ endured the bad that we would all know the good (His Love). When we experience trouble we must look to Christ, so that through Christ's wounds, we can experience joy even in the midst of our own pain, our own wounds, our own scars.
Me in the hospital in February 2012 after first neurosurgery.
I suppose everyone has a different experience of the hospital than I do / did, but for me a shift happens at some point during hospitalization. When I was admitted this last time, I was miserable. After surgery, I was hurting really bad. During my first days in a hospital I usually feel as though I need to be there. With this last ER visit and hospitalization, I could only find relief at the hospital and couldn't imagine going home. As time goes by, though, I begin to feel better and there is finally time when I realize I can go home. A shift happens where my need for the hospital is outweighed by a need to go home.
This time I had so many 'incidents' that made me feel bad (like the spinal fluid leaking or migraines) that I didn't realize how much better I was getting overall! On Saturday the doctor came in and said they were ready to discharge me when I was ready to go. I was shocked. At first I said, "no way." I mean, I had just had a migraine that morning, but, then, I realized that my pain meds were being reduced, anyway, and there is really very little they can do for the migraines anyway. There was nothing I was getting at the hospital that I couldn't do at home. It was an odd moment for me and I looked up at the doctor and said, "You know, it seems like it is time to go home after all." I only wanted to clarify our at home plan for remaining comfortable and healthy.
At my in-law's home recovering after my first neurosurgery in Feb. 2012
Sometimes it is difficult to recognize our place and what is healthy for us. Whether it is our marriage, a house, a church or organization, or group of friends we can sometimes forget to consider our own health and happiness. I think, especially in marriage, we get comfortable and stop talking to our spouses about healthiness in our relationship(s). Just like in my hospital stay where I constantly evaluated my health and situation with my wife, the nurses & doctors, and with myself; our marriages and other relationships constantly need to have healthy communication and evaluation otherwise we lose track of our health. We wake up one day and realize that we no longer have a healthy reason to stay.
To stay healthy, we can't just talk about the 'nice' things...In the hospital it isn't easy, at first, to talk about bowel movements or have someone you don't know help you with a shower; but these difficult conversations are just as important as the easy ones. In marriage, especially, it is easy to just say the "I Love You's" and forget to talk about the difficult things. Carrie and I try to talk about the difficult things as much as the easy stuff. It sometimes means that we fight. It sometimes means that we get angry or hurt, but, in the end, it always means that we grow in our relationship, know one another more, and have a more solid foundation for the future.
We have to keep an eye on our relationships and we have to constantly evaluate where we are in those relationships and their healthiness.
This is the dressing and where the lumbar drain enters my spine. You can also see a white (and red) safety valve just below my waist.
Before I tell this story I want to catch-up anyone who hasn’t been reading along in this blog. At this point I had a lumbar drain in my back so that they could keep the pressure from building in my brain. They were draining off 10 mL of spinal fluid every hour, but this is dangerous. If something happens that too much fluid drains I could get sick, have migraines or die, if I lost too much. Also, as you read in the last post, infection is a very big concern when they keep a hole open in your spine, so I have been nervous ever since my surgery. My nightmare night-after-night had been that the nurse had left my drain open or it had come loose and I was dying!
Alright, so now with the story:
On Thursday evening my wife went for dinner with her sister and I was sitting in bed with my iPad and decided to check facebook, twitter, email, etc. Since I was having some trouble with diarrhea because of the antibiotics and the many laxatives they had me on (to combat the pain meds) I asked the nurse to put an absorbent pad back on my bed.
Now, if you are laughing at me a little you have to understand that, at this point, I have two sets of monitors hooked to me, sequentials on my legs, a very important tube connecting my lumbar drain in my back to that machine, and, often, an IV. Also, I’m a fall risk so I’m not supposed to move without someone helping me...and it sometimes takes a few minutes before anyone answers my call button (let alone how long it takes them to unhook me and get me to the bathroom). So having bathroom troubles isn’t an easy thing. It was very likely that I was going to leave a pretty big mess.
Back to my original story: The nurse put a pad on my bed, but I’m tall and it wasn’t positioned quite right, so I remember sitting in bed and scooting about (the nurse supervised) and I pulled the pad up under me. I worry that I might have unintentionally and unknowingly pulled something loose at that point, but we’ll never know. The nurse left and would come back later with my meds. I remained in the same position checking facebook on my iPad. When the nurse came back with meds about 30 or 45 minutes later I was having a queasy stomach and felt a migraine coming on. It should have hit me then that something was amiss. I told my nurse that I had an unset stomach and a migraine coming on. My nurse left and later, I’m not sure how much later it was, (I was having a major migraine by then) I felt something wet behind me. I put down my hand into a bed full of spinal fluid. It still took a moment for me to realize what was happening. I looked down to see what had spilled and couldn’t find the tube for my lumbar drain. Once it hit me, I was utterly terrified by what I was experiencing.
I pressed the call button immediately and tried to turn up on my side the way I had lay the other night when he re-did my dressing. Luckily the unit secretary answered the call right away and I called out that my spinal fluid was leaking out. I don’t know how she made sense of what I was saying, nor do I know how my nurse, Sean, made it to my bedside so quickly, but it was his quick thinking and steady hands that were able to pull the bandage away and find a tube to clamp off.
The nurse came back and told me he had paged the surgeon and he waited, pacing (and freaking out a little), with me in the fetal position and blanket over my head (trying to keep dark because of the migraine I was suffering). There were many nurses and others (interns?) in my room by now. I could reach my phone so I called carrie to tell her that she should come right away. I lay there and finally worked up the courage to ask the question I needed so badly to ask, “If I lost too much spinal fluid to survive, would we know it already or will we find out later?” One of the nurses replied, “I don’t know, we need to wait for the doctor. The surgeon arrived and explained that to help alleviate my migraine I need only to be laid out flat. The migraine subsided a bit as he raised the bed to table height. I told him I’d just had work done on the dressing the night before and he responded that he was the one who had done it. I told him, “Then, doctor, you have seen my ass two times more than I would like!” (Which did illicit laughter from him and the rest of the room)
He said that I am young and healthy and since I was still alive and conscious I would likely be alright. He later told Carrie that if I were elderly or obese or otherwise in poor health I would have likely died from loosing so much spinal fluid.
So, as be began to work on me, my wife arrives on the floor. I know this because I could hear her voice raising as she tried to get past the nurses. To Carrie’s chagrin the room was already sterilized and they would not let her in.
I laughed a little and told the surgeon to watch out. I explained that Carrie, if she feels I was in danger and he was keeping her away from me...I explained that she would probably let him have it. After a moment of silence I said, "but don't worry, I'll remind her that you and this nurse just saved the life of the man she loves."
As Carrie continued to try to get in, the surgeon leans over and says to me, “That is true love. We have a hospital full of people who don’t have visitors, but you have someone fighting to be with you and to advocate for you.”
Had I been older or in worse shape, had I not realized the fluid was leaking out, had my nurse not been so quick...had the night not gone just as it did, I might not have survived that night. The recurring nightmare I’d been having all week came true, but because of an excellent nurse and just a short time later an excellent surgeon, I was put back together and my wife and I were able to see one another again. By the time the surgeon finished it was well after 1:00am. Carrie, again, stayed the night. I mean, it really wasn’t a choice, at that point. I don’t think anything could have moved Carrie out of that room that night.
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!!!
So here is a video of Scott as he came out of post-op and got settled into the ICU. You can see that no matter how many drugs they pump into him, they can't shut him up :-)
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 (beforedinner)... 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).
Each couple: Ken & Trish, Bob & June, Andrew & Katie, and Carrie & I went our own ways to spend our time, today. Carrie and I were looking for scenic streets, alleys and lookouts for photos and found ourselves climbing steps (photo left) and going up steep streets to find photo opportunities, stopping by the municipal market along the way. When we came back down to the city center we ran into Katie & Andrew who were sitting at a café. Katie pointed Carrie towards a jewelry store. We did our part to keep this island and its local jewelry maker prospering. When we left the quaint little jewelry shop, we ran into Katie and Andrew, again, at another restaurant so we had lunch with them. By now it was 1pm, or so, and Andrew headed back to the ship.
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