Driving and back to work

It's been quite a while since I updated my blog...partly because it felt like not much had changed and mostly because my "free time" has dwindled as I've taken back more of my duties as employee/husband/father. I went off the last of my medications (anti-seizure) on 11/11 and my primary doc expected that I would feel improvement in my fogginess as the medication worked it's way out of my system....and I have felt improvement. It was gradual where at first I had times of day that I felt almost normal alternating with times of day that I felt as foggy as before. Sometimes it seemed like I was actually foggier than before but I think it was just in comparison to feeling more clear/normal. In any case, The back and forth of the foggy/clear gave me reason to be both optimistic about my progress as well as frustrated that I still didn't feel "normal" all the time.

I was also cleared to start working 2-3 hours a day from home on 11/11 which was good as I was able to start being productive again. It was a little hard at first to focus and making decisions and determining courses of action has been taking longer than I'm used to.

Also, a week after I went off the anti-seizure medication (yesterday) I was cleared to ease into driving again. It was strange that first week to feel like a teenager again asking Allyson if I could take the car.

Several more weeks have passed and I feel fairly normal a majority of the time. The fogginess has become less and less and I went back to work (into the office) last Monday, 11/30. On doctor's recommendation the plan is to gradually increase my working time starting with half days and ramping up as I feet my brain is tolerating it. Sometime last week I began to experience "episodes" of double vision. It was accompanied by the same foggy feeling I had experienced all along. I wasn't feeling impaired by the double vision so I didn't make it a priority to let my doctor know about it. But it kept happening multiple times a day so I finally contacted my doctor today about it. Their initial thoughts are that it is either seizures or a result of fatigue. I was supposed to have a follow-up MRI in a few weeks so they decided to do it early (tomorrow) so they can make sure everything looks okay. They are also getting me scheduled for an EEG which should determine if what I'm experiencing are seizures.

I'm not very concerned about it. The doctor has said all along that he expected it would take 3 to 6 months for complete recovery...I am a little short of 8 weeks beyond surgery at this point and my recovery has been pretty good - in fact I'd say I'm probably 85-90%.

I'll update when I hear something back from the tests.

Decided to go with the buzz cut. Also some more MRI pictures for your enjoyment

It's not often one gets a good excuse to get a buzz cut so I decided to go with it. I like the low maintenance perspective.

I began physical therapy yesterday to improve my strength and stamina. They had me doing a variety of exercises covering arms, legs and core for about an hour. I was wiped out. Will continue 3 times a week for then next 4 weeks.

Had an "incident" last night. I got out of bed suddenly to go in and feed Rachel a bottle and I must have gotten up too quickly because I took a couple of steps and then remember putting my hand against the wall to maintain my balance. The next thing I remember I was on the floor. Fortunately I didn't injure myself but I scared Allyson and her Mom pretty good. I'll have to get up a little more slowly from now on.

I continue to feel only slightly better each day as progress continues to be slow now. My biggest complaint is still "haziness" in my mind....I'm just not where I'm used to be as far as sharpness but again the Dr told me it may take 3-6 months for this to be completely back to normal so I need to remember to be patient and to be thankful that things have been as positive as they have been.

As promised in my last post here is a series of MRI pictures.
1st MRI - taken in the morning just before the first surgery. You can see how the tumor is compressing one of the ventricles - they should be symmetrical.

2nd MRI - taken just after the first surgery was stopped. You can see how the brain has swollen into the space where skull bone has been removed.

3rd MRI - taken just before surgery 2. You can see how the ventricles are already much more symmetrical



4th MRI - taken the night after surgery 2 completed...almost looks normal

Sutures removed

Had follow-up visit to Dr yesterday and had the sutures removed. The incision is mostly numb so it didn't hurt much....just a little pinching. It is healing well. I need to decide whether I buzz my hair down to match the peach fuzz patches or let it fill in looking "patchy" - please feel free to send your input.

My biggest complaint is still that my mind just isn't as clear and sharp as I'm used to. I was reassured yesterday that this is normal after brain surgery and I should expect it to take 3-6 months before I feel like I am completely back to normal. Second to that is stiffness in my neck which apparently is also common.
We also had the chance to go over the MRI's that were taken before and after the first surgery, and before and after the second surgery. They were amazed considering the size of the tumor that I did not have more symptoms than I did.
The amount of swelling of my brain after the first surgery was significant and for the time between the first and second surgery my swollen brain actually occupied the space where they had removed part of my skull in order to gain access for the surgery. I'll be getting disks of the MRI and will add pics to the blog in the next day or two.
Oh..I was finally able to take a complete shower this morning and wash my entire head. It felt soooooooo good! 4 weeks without a complete shower is tough!
My mom and dad are heading home Sunday morning after being here for a month for the whole thing. Thanks Mom and Dad for all your help and support. It has been an unexpected blessing to have all this time together. Allyson's mom will be here until we get her a plane ticket to go home :) Thanks for your ongoing help Barbara :)

Here is a photo of the surgery site on the top of my head - I wonder if my hairstyle will be affected?

Recovery continues though a little slower this week

Thanks to everyone for all of your thoughts and prayers and cards and meals. The outpouring has been amazing and I am humbled by everyone's generosity.

My recovery this week has continued to progress though more slowly. At the beginning of the week I was feeling pretty weak and my stamina was not very good. Also had a couple of rough nights with the strongest headaches I experienced since surgery #2 and I think I probably overdid it so I had to rest more. My vision has continued to improve and though I seem to be hypersensitive to motion, sound, light, etc (I feel like I am being bombarded with stimulation most of the time) this seems to be diminishing gradually. My physical therapist had given me various exercises using cans of soup for weights. Thursday I graduated to 5 lb weights but I'm surprised how much it drains me to lift them. I'm also doing leg exercises and they feel like spaghetti when I'm done. But I am getting stronger each day.

I think my vision may be approaching normal but I still have a haziness in my head so I don't feel quite myself yet. I stopped taking prescription pain killer a couple nights ago and I'm just using extra strength tylenol which is good - the other stuff made me feel a little out of sorts at night and I actually felt like I was having hangovers when it was wearing off. So hopefully the quality of my sleep will get better too.

I was able to feed Rachel (now 9 wks old) a bottle again for the first time again on Thursday and I was able to hold her for a while - I can't believe how much she has changed in just the last few weeks - smiling, cooing, watching intently - amazing to see.

I can't wait until next Wed when they remove the sutures from my head and give me the all clear to wash my head completely - I think it's been 3-1/2 weeks since I shampooed my hair in entirety - yuck!

Just weighed myself and was surprised to find I've dropped to 171.5 lbs... my weight before all this hovered around 187 which was a good weight for my 6 ft frame. Looks like I need to bulk up a little bit. I'll post again in a couple days.

Came home yesterday! What a difference in recovery from surgery #1 and #2. I don't remember much from recovery from surgery #1 in the first 2-3 days and most of it was bad. I remember little glimpses - major vision problems, difficulty speaking clearly, nausea, vomiting, family coming in and out, nurses and aids helping me stand and walk, getting shots and having blood drawn at all hours....I was out of it. After surgery #2 I was euphoric. I did not experience a big setback like I did with surgery #1. There was some but nothing in comparison. The biggest issue was numbness and tingling on my right leg from calf to toe that appears to be due to positioning during surgery and has improved greatly.

Had a really good day today. We discovered late yesterday that there was a small staple in my head that should have been removed so we put a band-aid on it and in a quick trip to the Dr office this morning they pulled it out with little pain. While I was there they did a quick visual test and my peripheral vision continues to improve as expected. At the moment I'd say I'm probably hypersensitive to things (motion, sound, light, etc , followed closely by having little stamina. The ride home in the car yesterday felt a little like watching an Arnold Shwarzenegger action film to me. Every moving thing was a blur. Still having some similar hypersensitivity today - watching big screen wigs me out after a little while.

Feeling stronger each day. Got to be outside for a few minutes in the sunshine and beautiful 60 deg fall weather and was able to spend more time with Allyson and the girls.

Jim's Home from the Hospital

Praise God - Jim was released today at about 11am! He just couldn't take another day of hospital food:) Now it's onto recovery at home. I'll let him take over the posting tomorrow for now it's resting on the couch and some football.

Ahhhhhhh
-Allyson