brain surgery – Carnes Family Web

08Feb201508Dec2016

Holy Days

Scott Carnes Finding My Way anniversary, brain surgery, Christ, christianity, christmas, Easter, faith, good friday, holy days, jerusalem, life, manger, neurosurgery, palm sunday

Yesterday was a special day. It was our anniversary…of sorts. Three years ago, yesterday, I was wheeled into surgery to remove a brain tumor. It is, ironically, a day of which I remember very little…yet it is a day that I will never forget and a day that redefined my life and relationships forever.

Our lifespans are each filled with many special days. Days of discovering a terrible illness, surgeries, births, deaths, and weddings. If that weren’t enough we often find ourselves commemorating these special days year-after-year. Yet, our lives are not only made up of “special days.” A birth of a child is special, sure, but so is the next day as you hold that child or watch a grandparent hold the child for the first time. A lost tooth, first crush, first day behind the wheel: these special days begin to grow together. We begin to realize that every moment of life is a celebration of that first breath and how we live our lives will give meaning when we come to our last breath.

The same is true of Christ. His Easter resurrection could not have been without the last breath of Good Friday. Good Friday’s meaning was amplified by a triumphant re-entry into Jerusalem which we celebrate as Palm Sunday. None of the events from Palm Sunday to Easter Sunday could be celebrated without a small child born in a manger. But these special days would not have held so much meaning without the daily work of Christ: healing, loving and community building.

Too often, I think, we focus on Easter and Christmas to the detriment of Christ’s daily works. Christ’s life was not primarily about one or two days or moments. These special moments shaped our relationship with God, certainly. These days were pivotal in human history, absolutely. Yet, these times are inexorably tied to the daily life and acts of Jesus the Christ. These “special days” lack specialness without the daily work of the Messiah.

In fact we don’t have high holy days in the Christian tradition. Each Sunday is an equally important Holy Day because we remember not just a Jesus on a Cross but also a Jesus by a well in Samaria, healing a man at the pool of Bethsaida, raising Lazarus from the dead and calling fisherman from their nets by the sea. Each sunday celebrates the specialness of Jesus Christ on Earth: his birth, death & resurrection, of course, but also his life of love and message of peace & justice.

I pray that as we approach each new day of faith we would model our lives after Christ: living each day in pursuit of love, peace & justice. That we would strive, each day, for a closer relationship with God and celebrate that relationship week-after-week on Sunday mornings!

04Oct201208Dec2016

Reboot

Scott Carnes Finding My Way brain surgery, carrie carnes, change, god, love, marriage, neurosurgery, new life, possibility, reboot, Scott Carnes, scotteugene79, starting over, tomorrow, worldview

What does it mean to start over? When it comes to a cake, you have to trash the whole burnt mess and start with all new ingredients. Luckily starting fresh in life doesn’t have to be so violent (or messy), but it can be. Sometimes we have to lose our lives in order to start over. Jesus said something about that in the Bible, in fact….

For me, starting over wasn’t an obvious thing. I didn’t even realize it was happening nor did I have that intent. Yet, over the last few weeks I’ve come to realize that I look at certain things differently. My worldview has shifted ever-so slightly.

I notice it in things as simple as my sleep schedule. Over the last few months I’ve been going to bed earlier and getting my day started sooner. Is it because I look forward to what tomorrow holds?

I notice it in my attentiveness to my wife. I don’t know if she notices, but I’m a little more aware of what is happening for her, although a new church appointment has kept me from investing more time in my marriage.

I notice it in my outlook on issues and, even, moments of “crisis” around me. I think the experiences of a brain tumor, two neuro-surgeries, and a near-death experience in my hospital bed have changed my world in ways I didn’t even realize… somehow for the better.

I don’t think you will notice the changes I have experienced. I don’t think it is in overt ways, necessarily, but it happened all the same. As a pastor, I look around at the world and wonder…is that what faith does? When we begin to see that there is hope and love in this world, does it change us? I think so. We don’t always notice the change right away, but when we see the world through the lens of possibility instead of impossibility…when we see that this world is more filled with love than hate…when we recognize that God can give us hope for a brighter tomorrow…I think it changes our world and us a little at a time.

Well, enough rambling for now!

02Jul201208Dec2016

What A Week!

Scott Carnes Finding My Way bloomington-normal, brain surgery, Carnes, church, communion, congregation, fatigue, illinois, Normal, pontiac, Scott, surgery, transition, united methodist

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?

blessings to you,

24Apr201208Dec2016

Wednesday: Exposed!

Scott Carnes Finding My Way brain, brain surgery, Carnes, carrie carnes, Dr. Dacey, Dressing, Lumbar Drain, neuro, neurosurgery, Scott Carnes, scotteugene79, surgery, trustytrident, wife

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!

17Apr201208Dec2016

Day 3: Monday at BJC

Scott Carnes Finding My Way Barnes-Jewish, BJC, BJH, brain surgery, Carnes, Carrie, Hospital, MRI, procedure, roommate, Scott, scotteugene79

Scott hard-at-work blogging from his hospital room. (That’s some great hair, Scotty) -Carrie

You are probably getting tired of my hot air, but I have advice. I’m writing this, so if you’re tired of reading it, stop. For the rest of you, press on because it only gets more monotonous! Are you excited?

Monday I was finally able to have some breakfast and it stayed down. Whoo-hoo! The doctors finally came around and explained surgery and my MRI results and by mid-morning I had this new roommate who is a really nice fellow.

If you’ll remember my meals kept getting pushed back because they didn’t yet know how soon the surgery needed to be. The real question at hand was whether there was an infection and the MRI came back clean. More good news. The down side to this, of course, was that after all the waiting I was in for more waiting. Well, that’s okay. I’m not in a hurry to be under the knife again. I had breakfast and, even tho it was cold, gross and greasy: It was one of the best meals I had ever had. Oh boy was I hungry!

When it came time for lunch, though, (yes this is about to take a sad, unfortunate turn) they said I couldn’t eat for awhile again. They were going to do a procedure to reduce the pressure and swelling by using syringes to pull some of the fluid (and blood) out of my head. It wasn’t so bad. At first Carrie told me it was a spinal tap and that sounded excruciating, but it wasn’t a spinal tap, they just had to get under the skin, muscle and scar-tissue to pull it out. Now, don’t get my wrong, it hurt. I think I nearly squeezed my wife’s hand off, but it was bearable and I finally had some relief once I recovered from the procedure. They did the procedure right in my room and numbed the skin with lanocaine (sp?)

The rest of the day was super-exciting. I laid in bed all day. I had fun little moments like when dinner came, but it was a very long day. On Sunday I slept nearly the whole time, but by monday I found myself not sleeping all that much. You may know something about that yourself, I don’t know. But isn’t it increasingly tough to really rest in a hospital once the newness wears off? Well, it is for me. I think my buttocks begins to get sore from sitting and my nerves get worn by the staff, my family, and other patients and I have a harder-and-harder time truly resting!

That’s really all that is fit to print for the moment. After my minor procedure I was pretty well out of it for the next hour or so. It really left me tired and sore, but once I began to sit up I realized that I felt tremendously better.

17Apr201208Dec2016

From Pontiac to St. Louis: The Transfer

Scott Carnes Finding My Way Barnes-Jewish, BJC, BJH, brain surgery, dacey, hospital transfer, pr, tracy, videos

I forgot explain arrival at Barnes-Jewish. I’ve never been transferred from hospital to hospital, but I guess we assumed that we’d get admitted and wait for a room and paperwork, etc. No. It was amazing. They already had me assigned to a room before we left pontiac and when we arrived the paramedics took me directly to my room. Of course, it wasn’t, exactly, straight to my room. The paramedics were from streator and so neither they nor I knew how to get from the ambulance entry to 11579a. It took three staff members from BJC before we got proper directions. It is such a big hospital that the first couple staff members had to ask others before we had directions.

Of course, that is the exceptional thing about Barnes-Jewish, you expect to get lost in the big-ness of it, but staff are so friendly that they will walk you all the way to your destination just to make sure you get there. Boy, the staff here has been tremendously helpful.

After my last stay the public relations department contacted me thru my doctors to ask if they could use some of my videos. To do so I needed to fill out a consent form. When I got here I realized that they should bring the forms while I’m in the hospital or I’ll have to find them, fill them out and mail them back. I has just told a nurse that I wanted the PR department to know I was here. You know they didn’t have a chance to call? Nope, the PR department saw my tweets on twitter and stopped by just to see how I was doing. An administrator, Tracy, who is with quality assurance found out from the internet that I was here and stopped in to check on me.

This is a far-cry from ‘getting lost.’

16Apr201208Dec2016

Day 1 – The ER in Pontiac

Scott Carnes Finding My Way brain surgery, Carnes, Carrie, CT Scan, Emergency, Gretchen Stinebaugh, Hospital, OSF, Room, Scott, scotteugene79, St. James 1 Comment

Gosh, it’s weird and confusing to be here all over again. Here I sit at Barnes Jewish waiting for surgery. I’ve been through this once so you’d think I’d know what’s happening, but i don’t. It’s been a strange whirlwind sort of weekend and we are just getting to see the full picture.

These last couple of weeks have been harder on me than the initial recovery and last week it got real bad by wednesday when I woke up with terrible pain and headaches which caused me to throw up and then I continued throwing up all morning from about 4 or 5 am until noon and then I finally found a comfortable position and fell off to sleep and slept the rest of the afternoon. The next couple of days were rough, but no more throwing up until Saturday. Saturday was nearly exactly like Wednesday. I woke up earlier than usual and then continually vomitted, but it never stopped. We called the neurosurgeon, just as we did on Wednesday and they weren’t terribly concerned (they didn’t think it was surgical or related to my surgery). But the neurosurgeons said that we should go to our local ER if the pain persisted.

Finally around 3 pm or so we realized that I was getting no relief. The problem, though, for me, was that I couldn’t imagine having to go by car to the hospital. The light and motion seemed like they would just make everything so much worse that I delayed a fair bit before agreeing to go. Well, reason kicked in and my wife helped me to the car and drove me over to St. James OSF Hospital in Pontiac. We go to the hospital around 4 or 4:30 pm.

They got me right into an ER room and I we asked them to make it dark and quiet. They took care of it immediately and got me on some anti-nausea meds and morphine. Gretchen stopped by cause she was already out and about and sat with me while Carrie went home to pick up my MRI scans and reports from February and March (which we had left at home). The Pontiac hospital did a CT Scan and we waited until 2 am or so to find out that they believed there was bleeding in my brain from the surgery.

It was a long day, but finding out what was going on and finding out that I was getting to transferred was a load off. Sometimes just having a plan makes everything a little better!
I will share more a little later and bring you all up-to-date. For right now, I’m going to relax a little and wait for Carrie to get back from the waiting room. A visitor just came and she took them away from the room so that I could rest.

Thank you, all, for your on-going prayers and concern. We do appreciate your caring support very much!

16Feb201208Dec2016

I Can’t Do Anything!

Scott Carnes Finding My Way bible study, brain surgery, church, driving, Evenglow, First United methodist, incompetent, narcotics, old, surgery

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!)

Scott

05Feb201208Dec2016

Yes, this is my MRI from two months ago and that is my tumor.
We still don’t have a proper name for it.

In just a few hours (at noon) I will be undergoing a special MRI. The doctors are going to be placing small sensors all over my head and doing a scan that will let them see what they are doing during the surgery. If you’ve ever seen Dr. Shepherd on Grey’s Anatomy doing a TV version of brain surgery, I imagine it will be a lot like that: without all the distractions, sex and death. This MRI will be loaded into their equipment on Monday morning and they will be able to see what they are doing inside of my head.

What we were not aware of, until Friday, is that these sensors are kind of like green lifesavers. That’s not the good part. Wait for it. They stick them on my head before the MRI at noon on Sunday and I have to keep them on until (and throughout) the surgery. Okay, I know that in the grand scheme of things that doesn’t seem like such a big deal, but we planned a big dinner out with some of our family Sunday night. You know, a last nice meal before the surgery. Now it appears I’ll be going to a nice restaurant in Saint Louis looking like some sort of Star Trek alien.

Well, at least I won’t actually see anyone that I know. That’s the upside. Oh- and it’s the Super Bowl, so we’re likely to be alone in the restaurant, so no one may see me anyway!

On a related note I learned something else recently. One of my mother-in-law, June Berry’s, friends had a brain surgery and had a stressful experience as she was coming out of anesthesia. As she woke up she found that she was being put into an MRI. You can imagine that it was all very disorienting for her! It was a very stressful experience and June’s friend wanted me to be warned about it, especially because it was a similar surgery with my same surgeon at the same hospital. I have good news. Well, they do it differently now. This is the cool part: They now have an MRI right in the operating room so when they are finished with the surgery and I’m still on the operating table (and still knocked out) they will do an MRI right there and then to make sure there is no swelling, bleeding, and to make sure that no part of the tumor remains.

Isn’t it remarkable that we live in an age where my surgeon can scan my brain and see what he is doing as he operates? Isn’t it remarkable that we live in a time when we can have MRI’s, which were on their own so rare even just two decades ago, right in the operating room?

Anyway, I just wanted to share a quick update. I hope that this note finds my friends and family doing well and I will be praying for all of you! May God’s blessings be evident o you all on this Sunday morning!

I am especially praying for those of you at First United Methodist Church Pontiac who are working through the Fruitful Congregations material in my absence. I pray for the Holy Spirit to be upon you all in this discernment process, to show you a way forward, and to build up your passion and excitement for ministry in our church, community and the world!!!

Blessings & Peace!

Scott