The beautiful stained glass at my new church in Normal.
This past week has been an incredible journey and I want to thank all of the people of Pontiac and Normal who have made this such a positive and faith-filled transition!
The people of Pontiac shared with me during a farewell reception and the thoughtful cards, gifts, and well-wishing touched me and ensured that we left Pontiac feeling cared-for! Meanwhile, the people of Normal have welcomed us with graciousness that we could not have expected. For instance, two members of the Staff-Parish relations committee (my liaisons with the congregation) showed up on move-in day with a large laundry basket filled with house-warming gifts: things we would need as we started unpacking. They also presented us with gift cards for Steak-N-Shake and Avanti's. How thoughtful! The Avanti's card paid for our pizza that night, because we had no dishes unpacked nor energy for cooking!
Fast forward to this past weekend. I had a funeral on Saturday morning and preached at a worship service on Saturday night and two worship services on Sunday morning. I made it though the weekend in pretty good shape, but had a moment during the 9 am worship service communion when fatigue hit me. I had to hold on to the wall and rail to finish, but once I sat down and got to rest, I was fine again.
There are moments like that which remind me that I'm still recovering from surgeries, but, mostly, I don't feel any different than before my medical problems began. I just have to watch for my moments of stress, weakness or fatigue and know when to slow down or rest...
Mostly, this week has been a joy. I feel as though I have experienced love from one congregation and great hospitality and welcome from another. Who could ask for more than that?
Lately I've had a whole lot of people comment on my weight. Either they say something like, "Oh you've put on some weight, you look much better," or something like, "oh, you look too thin (or sick)." Now, I know that it is all amplified because folks know I had a brain tumor: so I don't take it personally...but it has me worried!
I think it reveals a larger problem in society, especially the rural, midwestern culture here in Livingston County (Illinois). Our American Society is, quite simply, obese. I was overweight until not long ago and now that I'm at the top end of my healthy weight range, everyone thinks I am sickly. I still have flab, I'm still not fit and toned...yet everyone thinks I am now unhealthy! Let me say it one more time: I'm not even at the low side of my healthy weight range and everyone around me seems to be freaking out, why? Because so many who are around us in rural midwestern America are overweight. Overweight has become the standard, quite simply.
I'm not coming down on obesity because of how people act, by the way (I'm not calling people lazy), nor am I even upset because of how people look (It's really not about vanity). I'm honestly concerned for my health, my family's health and for the people around us. Being overweight is a serious problem which leads to all kinds of health problems such as diabetes and heart disease, for example. And weight gain, beyond one's healthy weight range, is an indicator that one's diet and exercise are out of whack and that things are not well with your body! (When you are gaining weight your body is trying to communicate with you)
Well, back to me. Last week someone cornered me and shared their concern about my weight and I responded that Weight Watchers (my weight loss) saved my life. It did, by the way! I told them the story of how my spinal fluid leaked into my bed after my second surgery. I told them about how the surgeon shared with Carrie that I would have died that night had I been any heavier or older. I told them that losing 35 pounds and getting into my healthy weight range was not just to look better (vanity), it actually saved my life. Now, I've responded this way with several people, but the reason this one interaction stands out in my mind is because the person responded to my story: first, by saying, "Oh my." and then saying, "what do you mean about a healthy weight range?"
They were serious. They had no idea that based on sex and weight there are guidelines to help people find a healthy weight! Today I want to begin correcting this view. More importantly, I want to become more vocal about our need, especially in rural communities, to work against obesity and grow in health. I want to do this work not to be critical of people or to be hurtful, but because I want to help. There are many people suffering from the plight of obesity (or at least being overweight) and I would be remiss if I didn't share my own experiences and work to help them. At my heaviest several years ago I was 225 and I hit my goal weight of 165 pounds a few weeks ago (when I arrived in Pontiac two years ago I was about 200). I'm a 6' male and my healthy weight range is 147-184 according to Weight Watchers. I got to where I am by eating more vegetables and fruits and cutting down my oil and carbohydrates, I got to where I am by eating well (not being hungry), and I got to where I am by adding some basic exercise to my routine which not only helped me feel better and lose weight, but also helped me to have more complete and enjoyable days.
I hope you will join me as I continue working to be more healthy. Don't do it for me, do it for you!
Also, if you'd like to find you're body mass index (figure out how you are doing), click here!
Get started with a new and accurate bathroom scale:
My wife and I divide up many of the household chores and share responsibilities, normally, but since my first surgery on February sixth I have been very limited in what I can do. Over the last few months I have not had to put dishes in the dishwasher, do laundry, mow the yard...well, actually, I haven't had to do anything but sit in a chair and take occasional walks! My normal routines and practices have been interrupted and the longer I go without doing them, the more difficult it is for me to start again.
Yesterday I finally unloaded, loaded and unloaded, again, the dishwasher. This was the first time I've done any sort of chore for quite some time. The really embarrassing thing is that it isn't even a real chore. I mean, if I'd washed dishes in the sink that might be a real chore, but I just rinsed some dishes off and set them in a machine. Yet, this insignificant task seemed horrendous. I put it off all morning until I knew Carrie would be returning from work, and, finally, when I was at the eleventh hour, I went about a task that, in that moment, felt tedious and painfully slow.
How is it that a task could become so difficult when it is a routine I've done a million times and never felt particularly burdened (that I can remember). Well...now, to be fair I need to think back to when I first moved out on my own and had dishes to do (and no dishwasher). The dishes often mounted up and it often came down to eating on paper products before I would get around to washing dishes (I was a terrible bachelor).
Perhaps it is in the routine that tasks and ways-of-living become familiar and do-able. Perhaps, in forming a routine, we make a task more personal and intimate and, in doing so, make it tolerable, if not pleasurable.
The first time we make a bed or pick up clothes or change a diaper or run a vacuum... the list is infinite.... The first time or the first few times we do something we are bound to find it more difficult, but the more often we do it, the more it becomes part of our life-ritual, the more easy and familiar it becomes. One of the best examples is exercise, I think. It was easy to motivate myself to go to the gym the first time, but the next few times it was terribly difficult. I got home from work and I already felt exhausted. The last thing I wanted to do was walk over to the gym and wear myself down further, yet, once I got through a week or so of going to the gym, it became a highlight. It wasn't until it became a ritual that I could enjoy it and I began to look forward to it!
In our lives of faith we have the same issue. If you are a church, synagogue or mosque-goer, then you may recognize this. If you skip worship one week, it is easier to miss it the next, and getting back to your faith practice becomes harder and harder. Prayer is the same way. Perhaps that is why muslims pray so often and methodically. By praying seven times each day they have built prayer into their life-ritual. The prayer becomes both familiar and easy, in a way.
For many, dare I say most, Christians it is more difficult to pray. We don't have the ritual. Maybe we've developed a practice of saying a prayer before a meal or at bedtime, but do we interrupt our day for prayer or does our day follow our prayer cycle? I'd wager for most Christians it is the former!
I think practice is important in all that we do, if we want balanced and healthy lives. During my most recent stay in the hospital, I was feeling very sore in bed. I mentioned it to my physical therapist. She got me out of bed and tried to move my legs, but they couldn't move more than a few degrees without pain. My muscles were tight from lying in bed all day everyday for so long! My legs were used to walking and bending and running. They were used to a certain practice, but they were out of practice. If any of you have gone to the gym, biked, or run further than you are used to, then you know what I mean. You've had the opposite experience as I: you went beyond your usual practice or ritual.
In life we need balance. If we want to start a new faith practice it is important to do so in a measured and responsible way. We should begin praying, reading the bible, or worshipping in a way that is tenable (sustainable). If you've not had a regular prayer life, then starting 20 times a day is likely not sustainable as a new practice, but finding one or two times during your day (or even 7?) might be. Finding 10 minutes each morning or evening to read the Bible is more likely to be sustainable, for most people, than trying to read a chapter everyday.
On the other hand, if we drop our habit, even for a day, we risk atrophy. In any of your life-practices, this is good advice I would wager. If you are a person of faith, I especially commend to you that you heed this advice and develop healthy practices. It maybe difficult, at first, but it will grow you, strengthen you, and help you in all of your other facets of life.
Images found at: http://allwomenstalk.com/ & http://www.thegospelmatters.com/, respectively.
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!!!
image found at: http://www.lavidarollercoaster.com/2011/01/waking-up-from-anesthesia.html
The last time I had surgery, in February, the anethesia had some weird effects, if you follow our blog you may remember some of them. The biggest thing was that when I work up from surgery I thought it was the night before (surgery) so I thought my wife should be there and that I was at my in-laws. I started asking strangers where my wife was and became agitated and yelled for her. I was also hot and began trying to tear off whatever bedding they had on me and pulling off my gown.
I don't remember any of this, just vague recollections...so I'll pretend (in my own head) that it was just a dream.
Once I had been awake for a while I could remember more, but just back until I checked in at the surgical waiting room. But clearly I lost a few hours on either side of my surgery. It was completely different this time. Expecting that I wouldn't remember anything, I made videos while I was in pre-op to make sure I would remember something of the experience.
After the first surgery I thought that, in a way, it was cool that I lost those hours before surgery because all the anxiety, all the worry, all the doubt that I must have been feeling (that sour feeling in the pit of your stomach before you're about to do something you don't want to do) are forgotten. I mean, if I don't remember those feelings they can't be real to me, right? Who wants to remember the bad parts????
Well, this surgery was different because I sure do remember everything. Yup. Nearly everything! I remember the ride to the OR in my bed. I remember my wife sitting with me. I remember saying goodbye to her as we wheeled away. I remember making jokes (i'm sure they were bad/cheesy) with the Surgical Team as I was being positioned in the OR.
Had I just had the videos to remember that hour, I could control the memory and make it just as happy as I wanted it to be...but I would have missed all the moments I mentioned. Pre-op time would have been a recollection of me, the way I wanted it, but memory works differently. I don't see me in the memory, I experience my wife, doctors, nurses and staff. I experience my father-in-law, Bob, stopping by incidently to bring something to carrie. I would have missed the teary goodbye with my wife.
image found at: http://www.familypromiseofmc.org/family-promise-snapshot-of-2011-in-review/
I want to suggest that memories aren't just in the photos of our albums or the videos in that box in the basement. Now don't get me wrong, those are great and they trigger memory, but that's all they are. Often, too, these triggers are just the happy moments, the smiles and laughs rather than the crying and frowns. But our experiences are more than just the laughs, our experience / our being / our relationships are also in the tears.
Sometimes, especially in contemporary times and in Western culture we try to only remember the good times, but we do a disservice to ourselves, our experiences, and our loved ones when we don't honor the whole experience of life. We must strive not just to be shallow and live in a small spectrum of our relationships, experiences, and memories... we must be whole and complete.
I suggest that we can experience more of life, get more from our relationships and find greater fulfillment when we open ourselves to the laughter and tears; the smiles and the frowns; the joy and the sorrow.
May you find wholeness this week, wherever you are!
Here is a video from after the surgery. We had been in ICU for about 30 minutes or an hour (Time moves differently after a surgery sitting around a hospital).
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 :-)
If you ask my mother about my care in the hospital her eyes still roll a little and she'll probably say, "I didn't like that ICU Nurse, Bob." If you know my mother, you'll know that she is a very agreeable woman and you must assume that something terrible happened in order for her to not like Bob.
Well, what happened is that she and the rest of my family (with the exception of my wife) got kicked out of my ICU room. Her 'little boy' was in ICU and she got kicked out by a nurse. That was all my mother needed to instantly not like Bob. You might ask, "What happened for them to get kicked out?!?" "Were there too many people in the room?" No, they just came in two at a time. "Did your father act inappropriately?" Surprisingly, no. "Was your mother too emotional?" nope. ...well, you get the point. They did nothing wrong. It was me. I got them kicked out. It's amazing that even in a drugged up, post-op stupor I could cause my family trouble.
You see, I started running the room. My type A personality kicked in and I was instructing everyone about what to do. "Fluff my pillow," "no, move that pillow," "move to this side," "get me ice chips." I could barely speak, but I could still direct, apparently! The way my wife describes it, I must have been the worst patient ever! EVER. Nurse Bob was actually awesome. He went above and beyond and looked at my needs. He knew that I needed to rest and realized that I simply wouldn't until he cleared out my family, so he made sure it happened.
I was thinking that some of us tend to do this, not just with a hospital room, but people like me tend to do this with our lives. People like me (you know who you are, don't duck away from that computer screen) think that we can control things, but sometimes trying to control the things around us...sometimes trying to bring order, actually gets in the way of our own happiness and gets in the way of what we really need.
We can get so busy trying to get what we want, that we totally miss what we need. I think many people put careers, money and prominence before the things that really matter. I remember the stress of picking a major as I went off to college. I was trying to manage my life and trying to prepare for: being married, having 1 1/2 kids, a dog, and a white picket fence. Oh, and I can't forget that I wanted to be very well paid. What I didn't realize is that I was making a mess out of my life those first couple years of college. I needed someone to clear the room and help me relax so that destiny would find me.
Finally the room got cleared and I realized that I was being called to ministry. It meant sacrifice, it meant letting go of some control (I'm still learning that part), but it also meant fulfillment and happiness.
Take a look at your own life. Are you trying to control it or are you living it? Are you focused on what you want, or will you let go and be called by God to what you need?
Some of you may be wondering why I've not been tweeting, facebooking, or blogging recently. Well, it's been a crazy couple of weeks. I came down with the flu a couple of weeks ago which was a real setback in the recovery process...and then I came down with the flu again this week. But I seem to be back on my feet and getting better. Carrie and I went for a walk with Charlie tonight and I've been watching some tv today, which is a first (tv was the worst: sound, light & movement).
I also found out recently where I would be reappointed and where Carrie and I would be living come July 1. Here is the video which was played this morning at First United Methodist Church Pontiac:
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).
Lately there have been some things I just can't do on my own. Has anyone else felt this way recently? For me the frustrations began on Saturday, February fourth. I wanted to do something special for Carrie before her terrible week of taking care of me would begin. I suddenly realized that on February 14, while I recovered from surgery would be Valentine's Day. What was I to do? I mean, I couldn't be sure of whether I would be alive or dead, able to make plans for my dear wife or be struggling for consciousness. I don't want to put too fine a point on it, but I was unsure of what my condition or quality-of-life would be.
I wanted to do something special for my wife, but I was faced with the reality that I could not actually wait any longer to make plans. If I didn't order some flowers and set some plans in motion, I could run out of time!
I was very fortunate to be with Carrie for her to see these on Valentines!!!
As a young man I seldom feel as though I will run out of time. I seldom feel as though I might miss getting something finished. Sometimes that means that I wait until the last minute to setup worship or plan a Bible Study. Sometimes that means that I don't often enough tell my wife or family how I feel about them. Oh, and more recently, it means that I get up at ungodly hours to eat sugar-sweetened cereal (every since getting to my in-laws) ...because there will always be tomorrow to exercise.
Isn't that a shame? I especially recognize the shame in such behavior this week. I finally found a week when my health concerns forced me to face my mortality and the precariousness of life. I suspect that others of you have felt these feelings sometimes, am I wrong? Don't we all feel a little helpless (maybe hapless) from time-to-time?
One reality that really slapped me in the face, once I was out of the hospital this week, was the fact that I could not drive. I'm young! I never imagined for a moment what it would mean for me to have my driving privilege taken away from me. Well, stop the presses, let's be really clear: I never really thought of of driving as a privilege! Driving seemed to be a right for someone in my age and in my condition! I have always just assumed that I could drive.
During my hospital stay it was a non-issue, of course. Except in a wheelchair: No one drives in the hospital! That would be silly. No problem! But when I got my official discharge all my friends and family were away from the hospital at the moment. Still, no big deal. I had plenty to do and I began setting myself to work trying to gather up the many small items which had exploded into my room. My father-in-law and wife were on the way and all would be fine. I just had to be patient. Patience, though, really isn't my strongest suit. I made it it home just fine, of course...except that wasn't the end of the story. From the moment of my surgery right up until the moment I am writing this very journal entry...I have been on very powerful narcotics to control pain. That means no driving. --It means, actually, that there is a lot of very unsteady walking, too. My mobility has been severely limited and I find myself frustrated and continually impatient.
Not only did I find myself with strict orders to not do any driving, but I was under instructions to not shower, not get my head wet (that meant no shampoong my hair: gross!), and, perhaps most stressful: I was under orders to use a walker or wheelchair. Have any of you found yourself losing your freedoms like this? It was terribly disenheartening and this all left me feeling a bit silly and vulnerable. Of course, once we start learning our limits we begin to get used to it, right?
By day number two of all this: I was very comfortable with the fact that any strolls down the hallway would be with a walker. In fact, it brought me some comfort, in a way. I felt some security in knowing that I had something to hold onto. But even in the midst of comfort and security, we can have setbacks, right? The next day, without the Physical Therapist, but with my wife and parents nearby, I decided to take short walk with my walker (having notified my nurse, of course). The day before my walk had gone very well and I went at least two thirds of the way down the hall with supervision, but on this day: with my parents arguing behind me, my wife not in my line of sight and with commotion all around me (patients, nurses, doctors and others walking quickly past), I suddenly felt as though I was going to pass out. I'm not sure if I exclaimed it verbally or just thought it, but all that I knew was that I was about to go down -and embarrassingly, I had not even gone half the distance of the day before! I'm passing out! What a strange, terrible and helpless feeling. I felt like a failure, but my wife shouted and my father ran for a chair. I can't be sure of how it all happened, but somehow my body was managed into a wheelchair and my wife gave me the safety of her arms as she helped me to feel safe and secure once again. Oh- and just as importantly, she bouyed me up emotionally, reminding me of what I had accomplished and not letting me dwell on my failures.
Don't we all have moments when we realize we have gotten in over our heads and we worry that we can't succeed on our own? Today, as I ponder all of the freedoms I have temporarily lost and the strangeness that has become an every-day part of my life, of late: Today I cannot help but recognize all that I have gained, as well. It maybe frustrating to ask my mother-in-law for a simple ride to the store. It may seem lonely to sleep across the room from my wife...and it may drive my wife and mother-in-law mad that they are now scheduling their days around medicine pick-ups, Scott's silly errands, physical therapy, and home nursing visits.
Yet, as God is my witness: I shall do my my best to not take the help of others' for granted in the future; I shall try to be more ready to ask for help (I strained myself moving a chair by myself, tonight, instead of asking for help); and I, most assuredly, will strive to be more compassionate and available to providing support and assistance to others where I see them struggle.
I won't lie: This has been a difficult few days, but it has also been days of patience and learning for both my wife and I! Would you join me on this journey as we support on another, grow in community and call upon God to strengthen us, even on those difficult days?
Thank you for your continued love and support (and patience!)
