Well, it's been a little over 5 weeks since I had my surgery. Quite a bit has happened in that time, most of it involving me sleeping and taking meds. The first 2 weeks were somewhat rough, I did a ton of sleeping the first few days after I got home from the hospital. During that time, the fluid that was being drained off while in the hospital decided to build up under my right eye. A few days of attempting to sleep more upright and applying some ice fixed that right up. Can't say it was very comfortable trying to sleep that way but you gotta do what you gotta do. I dealt with some headaches for several weeks after surgery but those have generally gone away at this point. The staples came out a couple weeks after surgery which was surprisingly painless. Those staples get annoying and itchy after a while. To this point I'm still dealing with quite a bit of fatigue. Going to dinner or hanging out with friends tends to drain me after a few hours but otherwise I'm doing well.
Next Steps
We had a meeting with a neuro-oncologist - Dr. Robert Albright - who is a super-specialist in tumors that start in the brain. He had the results of the biopsy and it turns out I have a grade II optic glioma also called an astrocytoma with pilocytic features. Basically, it's a non-cancerous tumor growing off of my optic nerve. The grade II part means that is has "fingers" that are growing along my optic nerve which makes 100% removal via surgery impossible (unless you want to go blind). The doctor went over several options but ultimately he highly recommended radiation and chemotherapy to stop the tumor from growing (and possibly shrink it) so that it doesn't cause any more vision loss. The chemotherapy is an oral medication and will only be taken during the period of time that my radiation treatments happen. Basically, it's not a super-intense treatment and is generally used to help the radiation do its job better. Radiation will be 5 days a week for 6 weeks and that begins on April 20, 2015. The doctors seem to think I won't have much trouble outside of fatigue. There are some side effects and risks with the chemo but those seem to be very small - i.e. the risk shouldn't stop us from doing the chemo, apparently it's pretty effective. It sounds like I'll be getting an MRI about every 3 months for the foreseeable future to monitor the tumor and make sure it stops growing. The doctor said he fully expects to see me in his office with my future children looking at MRI's together....an uplifting piece of news. All-in-all we've gotten just about the best news we could have expected considering the location and type of tumor I have. By the way, if anyone knows someone who has a brain tumor I would highly recommend Dr. Albright. He is extremely thorough and is clearly passionate about his work.
I started back to work on 4/6/2015 and so far all is going well. I'm pretty tired when bed time comes around but I can tell I'm getting a little more normal each day that goes by. Again, I want to say thank you to everyone who has sent gifts, cards, and well wishes!
Here's my scar 5 weeks later
This is what you want your chemo medication to come in - very comforting
Guest Blogger - Steve Harvey (Nolan's Father)
Nolan is just 2 days out of surgery so I am pinch hitting for him as a guest blogger. Hopefully, Nolan will be well enough to do the next blog sometime soon. Time Warp
It is 7:30 am on the morning of our son Nolan's 2:00 pm brain surgery. Julie and I are both dressed and ready to go. Nolan and his fiancee Sarah are at the Neurosurgeons office doing a pre-surgery MRI with the purpose of marking Nolan's head with reference points that will be used later that afternoon in surgery.
Surgical Reference Points
They agreed to call us when they were on the way to the hospital so Julie and I had a few hours to kill. We found the hours leading up surgery to be uncomfortable, filled with emotion, and tense. Fear of the unknown can be paralyzing. It sounds silly to say but, time was nearly standing still. Minutes felt like hours. We finally decided to go and get some lunch near the hospital, more as a distraction than because we were hungry. Finally, they called and we were on the way to the hospital.
Pre-Surgery Family Moment
When we arrived at the hospital, Nolan was already in the pre-surgery staging area. We went back and chatted before surgery. Nolan's mood was confident, and calming to all of us. He faces difficult medical situations like his grandfather did with humor and grace. Nolan's sister Jessica arrived, as well as Sarah's parents. In spite of all the medical preparation, we managed some small talk. Time came for them to take Nolan back for surgery and we all had a bit of an emotional meltdown. We live in a time of incredible understanding of the human body, amazing medical machinery, and we trusted the skilled hands of the surgeon we had so painstakingly selected. We had every reason to be confident but the moment they roll your child away to brain surgery is one of emotion and fear. It is truly a "nothing else matters" moment.
The Value of Friends and Family
As we walked out to the waiting room, I was wondering how we'd deal with a 3-5 hour wait during surgery. We passed the time with a small group of very close friends and family and it was truly enjoyable. My brother Tony made the long trip in from Northern Indiana which was an excellent and welcome surprise. Time seemed to be moving along at it normal pace now and for that, I was thankful.
The Results
At about the 3 hour mark, we got the call that surgery was over and we met with the neurosurgeon in a consult room. Dr. Skidmore said the surgery went perfectly and they were able to decompress the tumor to some degree, which might or might not have a positive effect on vision. He removed the portions of the tumor that could be safely extracted without fear of damaging the optic nerve. Skidmore's prediction based on the MRI images was that the tumor is a low grade optic glioma and he said the surgical analysis further confirmed his educated guess. We won't know for sure until the pathology report comes back.
Surgical Recovery Room
Surgery Recovery
Those of you who have spent time in surgical recovery rooms know the effects of anesthesia can be entertaining. Sometimes I wonder if the drug makers leave this lingering effect just to take a little pressure off of a family seeing a loved one immediately after surgery.
Drug induced funnies:
- Calling his fiancee Sarah by the name "Snarnzorbs"
- "Dad, am I to understand that I have been diagnosed with Diabetes and recently lost 50 pounds"
Touching drug induced moments:
- "Sarah, just hold my hand for a while"
- " Dad, will you stay with me until Sarah gets back"
Sarah coaxing a smile out of Nolan right after surgery!
Sarah Baumann is Nolan's fiancee. They are engaged to be married on July 2nd. Sarah has stood by Nolan every step of the way in a situation that might have sent lesser women running for cover. We are so proud of both of them and see the love they have for one another. Sarah is special and Nolan is lucky to have her.
Hospital Stay and Recovery
The first evening of recovery was tough. He had a pretty good headache going which is no surprise, and the nursing staff kept him well medicated. He was not allowed to recline to more than 45% and said he could not get comfortable with the head wrap. Restful sleep was hard to come by. There was a drainage tube coming out of the incision in his head that had to be emptied regularly but the drainage subsided fairly quickly. You can see the drainage tube in the photo above coming down into the front pocket on the gown. Rumor has it (Nolan told me) that Sarah got a good nights sleep that first night but Nolan did not.
The day after surgery was a little odd. Nolan seemed to be doing very well physically and was managing pain primarily with Tylenol but his demeanor was far from normal. He is typically a very upbeat and positive person but was struggling and frustrated with the down time. Deep breathing exercises and walking were prescribed as "things to do" and Nolan was uncharacteristically uncooperative on those items. Sarah had the best sense of when to stop pushing and in the end, it all worked out fine. I was a bit worried about him that evening and traded some messages with Sarah. He's been through a lot physically and emotionally, and pain killers are a depressant so it should have been no surprise he might struggle a bit in early recovery.
The following morning, the head wrap came off and we saw for the first time what you see below.
The Bandage came off
We were all a bit surprised at the size of the incision. It is 30 staples covering a horseshoe shaped area of 7-8 inches. None of us ever asked in the pre-surgery consults what the incision would look like and the surgeon never thought to mention it. The photo actually looks worse than it is and once the staples are out, we are confident the incision will smooth out nicely. The entire incision is in the hair line and this will be a total non-issue in a short time.
Dismissed
Nolan improved throughout the day, ate well, and was returning to his normal self. Surgical drain was removed and he was cleared to go home. It was amazing to me that less than 48 hours from the end of surgery, he was in the car, feeling relatively well, on the way home to rest and recuperate.
Escape from St. Elizabeth
What Next
Pathology is supposed to be back early next week. At that time, we should have a clear diagnosis on what the remaining tumor is. Once we have that data, we will be off looking for the best doctors and facilities available to treat that condition. Dr. Skidmore tells us we will likely be referred to neuro-oncologists to determine ongoing treatment protocol.
For the moment we are enjoying a highly successful surgery and happy to have Nolan home and starting the recovery process.
In about 24 hours I should be done with surgery. That actually sounds pretty nice when I think about it. I'm sure it will seem like a long 24 hours, especially for everyone else, but it's only 24 hours. I'm still feeling pretty good too, not that nervous at all. I had a bit of a tough time sleeping last night, just had lots of things running through my head. Nothing negative or anything like that, just thinking about the surgery, work, what I'm recovery will be like....all sorts of different things. I'm sure tonight will be the same but multiplied by 10.
I did get a great present from my awesome fiance today that I think will make me very strong right before surgery. I hear it's a superfood:
Also, expect some good pre and post-surgery pictures from my family and fiance. I'll be getting an MRI tomorrow so they can put marks on my head to guide them in surgery. I will then get to go to the hospital and walk in the regular entrance with said marks on my head. So I'll be looking good before surgery and I think it goes without saying that I'll look good after. If you're interested in seeing the aftermath of brain surgery then be sure to come back here in the next few days :)
All-in-all, I'm feeling pretty good but I'm definitely ready to get the show on the road. The waiting game is the worst part but it's almost over! I'll be in the ICU overnight immediately following surgery (which is supposed to start at 2pm) but will hopefully be transferred to general care area on Tuesday.
Yesterday, I went and filled out the paperwork for my living will and power of attorney. My dad brought up that I should have all of that in place should the unthinkable happen and I'm glad I have it now. It's very weird to think about that kind of stuff, especially the kinds of questions that are in the living will document. It forces you to think about what you would want in the event of life prolonging treatment and so on. Would you want machines to keep you alive if your body could sustain itself? You're going to see and hear many Simpsons quotes from me, here's another (sorry for the bad quality, it was the only clip I could find on youtube) :)
Eventually, everyone should fill out these documents and think about these types of questions but I'll admit it is a little weird to do at 29. That being said, if you don't have these documents and have not thought about them, there is no time like the present to start doing it. None of us know when our time will expire and I believe it's better to have these questions answered ahead of time rather than letting courts settle it. Also, it's very easy paperwork to fill out. You really only have to think about where you want your assets to go and how you would want treatment to proceed in extreme cases. 10 minutes with an attorney signing documents and bam!, it's out of the way. I'm learning that you're never too young to have those things done.
To Everyone
I want to say that the outpouring of support since all of this started has really been amazing. I can't tell you how many comments I've gotten on Facebook, on this blog, and in person from people who I know and don't know who just want to say they are thinking about me. Friends of friends, co-workers, family, etc., it has really been amazing. It's very uplifting to know that that many people are thinking about you and wishing you well. It's lifting my spirits and I'm sure I'll need it as I get closer to surgery day (4 days and counting!). So, from the bottom of my heart, thank you to everyone!
I'm also still not that nervous about surgery, is that normal? Maybe it's just because I know they'll put me out and the next time I wake up I'll be in the recovery room and looking good (as usual). I'm sure it's much worse for family and friends waiting for results for hours on end.
I'm sure most of you reading this are aware of what has been going on with me the past few weeks, but for those of you who aren't aware, I'll start from the beginning....
The date was August 15, 1985, a day which would change the United States, nay, the world, forever....the day I was born! Ok, maybe that's too far back. Let's start about 7 weeks ago, early January 2015. That was the day I started having vision problems. I've always had 20/20 vision and have never had any issues whatsoever. But in early January I started noticing some issues with the peripheral vision in my right eye (specifically, the left side of my right eye...the nasal side). Basically, if I closed my left eye and looked at a digital clock and then looked just to the right of the clock, I couldn't see the clock with my peripheral vision. This appeared to be off and on for a few days so I didn't immediately go to the optometrist (Sarah, my fiance, let me hear about that decision later). Eventually, the problem stuck around and I went to an optometrist. The optometrist couldn't see anything wrong with my eyes but sent me to a retina specialist (ophthalmologist) in the event that there might be something wrong with my retina. A few visits with the retina specialist reveal nothing wrong with my retina. I was ordered to have a visual field test which essentially maps your visual field in each eye by having you concentrate on a single spot and clicking a button when you see dots in your peripheral vision. I don't have the specific printout of the visual field test but I'll do my best to recreate it below:
Ok, left eye is on the left, right eye is on the right. The black areas are where I can't see. Obviously, my right eye is much worse than my left but I was also having some issues in my left eye. Now, before everyone freaks out, I don't think the vision in my right eye is quite as bad as it looks. I can certainly see in some areas that the visual field test says I can't but it's definitely not good. Once the ophthalmologist saw this, he ordered an MRI of the head and orbits to attempt to see if there was anything going on with my optic nerve.
The MRI and Clinic Visits
On January 29, 2015 I had that MRI. Not really a bad experience if you aren't claustrophobic (which I'm not). I actually found it mildly relaxing despite the crazy noises that machine makes. The next day I got preliminary results that I had a roughly 1 inch tumor hitting my optic nerve and near my hypothalamus. Along with this wonderful news, there were also some unusual lesions on other parts of my brain but we'll get to that later.
Once we got that news, my dad and I started discussing places we could go to meet with neurosurgeons (Cleveland Clinic, Johns Hopkins, Mayo Clinic, etc.). In the end, Cleveland Clinic was able to get us in quickly and was quite a bit closer than any of the other big hospitals, only about a 4 hour drive. I also had an appointment set up with a neurosurgeon locally at Mayfield Clinic. After meeting with both surgeons, they each had the same opinion about how to approach the tumor. First, we'd need to do surgery to resect/decompress the tumor (it is cystic). Because of the location and the fact that it is hitting my optic nerve (and in one surgeons opinion, growing out of the optic nerve) they cannot fully remove the tumor. From there we would get a biopsy which would give us a firm diagnosis on exactly what it is and what possible next steps are. It looks like the procedure is to open a "window" on the right side of my head and lift my brain to be able to get to the tumor. There have been several jokes in this household about the cranial screw top method (if you've ever seen The Man with Two Brains). Cleveland Clinic also ended up performing a spinal tap to see if we could get any hints about what the other lesions on the brain were. Again, that procedure is not nearly as bad as you would think. However, a few days later I started getting migraines whenever I would sit or stand, laying flat on my back made them immediately go away. Two days of laying on my back fixed me right up (it allowed the would to plug which stopped the leaking of spinal fluid which was the cause of the headaches).
Just a note here, in order to understand how the tumor is affecting my vision the way it is I've put together a really crappy drawing based on the description one of the neurosurgeons gave us:
We have the two eyes at the top. The green lines represent nerves (for lack of a better term) that are responsible for different parts of your peripheral vision. The left line on the left eye is actually responsible for the nasal peripheral vision in that eye. The right line coming from the left eye is responsible for the outside part of the peripheral vision in that eye. As they go back and meet the brain, some of those nerves cross. You can see that the tumor is on the right side of my brain and is actually hitting the nerves responsible for the nasal part of my vision in my right eye AND the outside part of the vision in my left eye. So, what they see on the MRI accounts for what is happening to my vision. Hope that helps :)
Spinal Tap Results and MS
The results of the spinal tap suggested that I might also have Multiple Sclerosis. I met with an MS neurologist at Cleveland Clinic and he determined that I have no symptoms of MS but that the brain scans really look like MS lesions. As a result I have been diagnosed with RIS - Radiologically Isolated Syndrome - I.E. you don't have symptoms of MS so we can't say you have MS, all we have are brain scans that look like MS. The whole thing reminds me of an episode of The Simpsons where Lisa digs up a skeleton that appears to have wings. The town automatically assumes it's an angel but Lisa doesn't and she goes on a local talk show to discuss it. Here is a quote from the host of the talk show: "Miss Simpson, how can you
maintain your skepticism
in spite of the fact this thing really,
really looks like an angel?". Always gives me a little chuckle :)
Anyway, that neurologist believes this is very secondary to the primary tumor and we can discuss possible pre-treatments in the future after the big tumor is dealt with. There is still a possibility that the big tumor and the lesions are both caused by the same thing (as opposed to 2 different diagnoses) but all doctors seem to think it's unlikely. So, I guess that's a small piece of good news. For those of you who don't know, there is no test that says you have MS. It is just a series of symptoms along with scans of the brain revealing lesions.
Back to the Tumor
After several meetings with doctors and discussions with my family and Sarah, I finally decided to do the surgery locally at Mayfield Clinic. I really like the neurosurgeon and I think being 10 minutes from the hospital and doctors who perform the initial surgery will be better than being 4 hours away. From what we hear, the surgery will take about 3-4 hours and will require a roughly 3 day hospital stay. From there it's anyone's guess as to how long recovery will take but the number thrown around seems to be about 6 weeks. I have no idea what I will feel like during that time...I hear I'll be very tired, have a hard time concentrating, possibly have headaches, etc. Basically, take it easy and let your brain rest is the recovery plan. I'm going to do my best to keep this blog going after surgery to at least keep everyone updated and have a nice log of my experience. That being said, don't be surprised if it takes me a while to post after surgery which is scheduled for March 2, 2015.
My Reactions
I thought I'd add a little piece about how I've reacted to all of the news as this process has gone along. I think most of you know that I'm a pretty upbeat person, I don't let myself to get too down and I generally try to keep a positive outlook. When I got the news that it was a tumor I can't say that I was surprised, so I think that helped to lighten the load a bit. It definitely hit me like a punch in the gut, but I didn't let my emotions get the best of me. As far as the MS thing goes, it is in the very back of my mind at this point. It could be years before I have symptoms of MS, if I ever have them at all. I don't think it has really hit me yet that I will be going under the knife for relatively complex surgery. I'm sure as the next 8 days go by that I will be more and more nervous. I wonder what my blood pressure will be right before they put me under :) I guess the thing I'm most nervous for is the biopsy results but I'm doing my best not to worry about that until there is something to worry about. Mostly I've been making jokes about the whole situation...it's how I deal with the stress. I've always thought that good attitude goes a long way in recovery so I'm going to put it to the test. I'm sure I'll have my emotional days but I'll be damned if I'm going to let this make me scared and depressed. It ain't gonna happen.
I hope that everyone who reads this blog finds it interesting, maybe a little funny sometimes, and ultimately a way to be kept up-to-date about how I'm doing. I want everyone to know that I'll get through all of this and in a few months/years this will seem like a distant memory.
FYI, I like buttered and salted popcorn, Cinnabons, and chik-fil-a should any of you be looking for healthy snacks to aid in my recovery.
One last bit, I am very excited to use Uncle Eddie's lines from Christmas Vacation if I end up getting a metal plate in my head. "If this gets dented then my hair just ain't gonna look right".
