Almost normal

Well Mark went back to work yesterday. Unfortunately he also picked up that stomach bug so it was a little rough on him. Today was a better day. He is finding out that people really missed him which feels kind of nice. In just over a year, he made such an impression on people. He will continue for 1/2 days this week nad then see how things are going with his energy level. So far, he could probably stay at work all day but its okay to ease back into it.

I'm gearing back up for volleyball season. I'm a club volleyball coach in my free time during the winter. Its rather fun and I've always wanted to do it. It was my first year last year and it was a huge growing experience for me. This year will still be a challenge but I know my way around now which helps. I'm excited about it :)

We got the next appointment time for our followup in Little Rock. Mark's MRI is on February 4 and the visit with the doctor is on the 5th. We will have to figure out what to do about the kiddos and the doggies. Mark is also calling around about his followup care after dr. yasargil. At some point, someone needs to take him off of these meds and it isn't dr yasargil. The VA isn't sure who to ask so we get to chase that one down.

I was just talking to Mark about how amazing it was that the VA covered this. His insurance got billed but the VA picked up the difference for two reasons. As a retiree, they are responsible for his care for 5 years when he got out and then this was service connected. We know the cost was at least $30,000 for the week in the hospital. That doesn't include all the pre and post-op care.

I'd type more but Bear just came up here and flopped down on my arm. Now i'm stuck and typing sucks.

Next step

Mark goes back to work tomorrow. This is huge! He will start out at 1/2 time this week and then they will all decide if he will go back to full time after that. From the visits he did last week, it seems he was missed at work and they will be welcoming him back.

Everyone is well again. We had a great Halloween. We took the kids to the mall on Friday evening and did trick or treating there. It was cute with the kids. Then we dressed them up Saturday and I took them just to a few local houses. They don't need the candy and these were the homes that really care about our kids. Lizzie learned a halloween song from Little Einsteins that I had her sing at the houses. That went over really well :)

We only had 8 trick or treaters - that included our babysitter. Mark and I went out to a party last night dressed as Popeye and Olive Oyl. I drank.. and I was more hung over this morning than I have ever been in my life. Not fun and will NOT be doing that again - at least the hangover part of it.

There must be something wrong with the cozmos tonight.. where is the Sunday night football?? Not that the world series isnt' important but really.. its not as fun as football.

Last thought.. if you are in need of any chocolate or sugar - come to my house. We are giving this crap away to anyone who wants it.

My turn

So today hasn't been so great. I came home from work early because I was terribly nauseaous. I've been a little sick this evening but it seems like its getting better. No fever or anything but I did feel cold earlier so I took a bath. It was probably just the hot water and getting out but I was very weak afterwards and my hands started tingling. it all stopped and I'm feeling more stable now. pepto has helped. no clue what got me.. william had a stomach bug over the weekend.

i'm concerned for my very dear friend though. her son is sick. he is 18 months old and has H1N1. his oxygen levels are a little low so if he doesn't get better through the night wiht nebulizer treatments every 3 hours, he's going to be admitted.

we have been very lucky so far. with the exception of william projectile vomiting last weekend and runny noses, the kids are very healthy.

william is potty training. he is doing pretty well with it. he definetly gets that if he pees, he gets candy.. just little smarties but he still gets one. then lizzie gets one too..

okay.. that's it. i'm kind of tired so night night.

Scans

These are pictures of Mark's MRI scans. The first set were a few days before surgery. The second were the day after surgery.. note the swelling on the side of his head.

Dr update

Mark and William both had checkups today with our family doctor. He is awesome and I trust his advice. William is creeping up in the height/weight categories. He was at 25% at 1 year and now he is 50% at 2 years old. I am afraid he might be color-blind becuase he shows no interest in learning colors and gets them wrong all the time. Dr. W said not to worry and its early for that. Otherwise William is doing pretty good for a 2 year old. Mark is also doing well. He is off all of his narcotics. He chose to stop taking them a few weeks ago - they made him a little buggy. So if he needs to he takes Tylenol but that's it.

Lizzie hit her head tonight pretty bad on the our fireplace hearth. She was running around the couch like she always does and tripped. It almost cut the skin, but barely not. If it had, we'd be getting stitches right now. She's okay though. William is good, throwing hissy fits but he's good.

We were downstairs tonight. I LOVE our downstairs. The TV connections should be done this weekend and we will start migrating furniture down there. We played with the fireplace again tonight.. Does anyone else have a pellet stove out there with some tips? We get it going warm but it seems like there is something wrong. I have it on the highest pellet feed and low heat setting but the fire seems to be burning so strong that the pellet feed isn't keeping up. I might have to call the installer to check it.

Thanksgiving is coming up. Our house is open to anyone who wants to stuff themselves silly! Seriously - I made a 15lb Turkey and a 9lb ham last year for like 6 people and 4 pies. So.. feel free to come to our house!!

Sleepy

This will be short. Whoever's black dogs were running around the entire neighborhood need to be shot. I'm not a fan of animal violence but I've been up since 2:30 this morning becuase of my dogs going nuts. Then everyone else's dogs going nuts.. then my dogs going nuts again.... I'm sleepy now.

Seriously.. Bear is up for grabs. Love him to death but if someone else wants him, he's yours.

New day

Okay I've had a big attitude adjustment. I just went through a near-death experience with my husband and made it through. During that time, my love and devotion for my husband was solidified and stronger than ever. I got a tough break at work and my situation will be a challenge but the bottom line - it is just work. My true life is not my job. My children are wonderful as anyone who saw the pictures I sent out knows. My husband is the best and is going to live. Those are the important things.

Mark and I have talked at length about all of this. There are several things that have happened - 1. my confidence in myself has been shaken. Well I'll just have to fight back and keep doing what I do. 2. I've been slapped in the face with reality. Mark and I want to make this our home and that means focusing on getting our children involved and ourselves in activities.

Mark and I have been always focused on our jobs becuase that is life in the Navy. Your entire existence revolves around the Navy. We haven't shifted that idea yet. Mark has done a better job of it than I have becuase of the jobs he's had. He has been in positions that he doesn't have to bring home at the end of the day. My job is more 24-7 support. That doesn't mean it is my entire world though.

So last night I slept.. it may have been becuase of feeling better about life or becuase I was so exhausted - either way, don't care. Mark and I got a babysitter last night but we were so tired we came home 2 hours later. We went out for dinner at one of my favorite restaurants and picked out some Halloween costumes for a party then walked around. That was about all we could do..

The weather should be much better starting today. I am going to take the kiddos outside and let them play on the clubhouse for a while.

Tough

If you notice the time again, its in the middle of the night. William just woke up crying because he got his arm caught on his crib and now I can't get back to sleep. I had a really hard day at work yesterday and my mind is still churning on it. The short answer is no I didn't get the position I wrote about yesterday but there is more to the story.

Right now I feel very confused. I don't think I do well with corporate america. Being output driven and fast-paced are alternately considered strengths and weaknesses. Some days I miss the Navy, there was no question that was the idea. The Navy had its own downside though and I guess everything does.

So tonight I will question my own abilities and what I want out of life and see where the answers lead.. since I'm on the couch, I hope they lead me to sleep.

Early

If you notice the time, its early. I've been awake for about a half hour now. I woke up and now I can't get back to sleep. Today already has me wired. I have a lot to do and not that much time to get it all done. What I am keeping in mind though is that it is 'stuff'. For work, there will always be more 'stuff'. It will never end and that is the nature of work. So I'll get done the stuff that I need to get done and get ready for the stuff down the road.

I think a psychologist would have a field day with me. Not last night but the night before last I had another dream about the Naval Academy. I often have dreams/nightmares about that place and the Navy. They are usually okay dreams but they have a re-curring theme - I am missing uniform items or I am out of uniform. I am always looking for pieces that I am mising or finding a way to get to the store to try to get what I need. Not always the same scenario but it is the same theme.. So those of you who want to analyze, go for it.

My 10 year reunion is next year for the Academy. I don't think I'm going to go. My high school 10 year reunion was a let down (except for finding a few of the friends I did want to find again like Tory :) ). It is the same weekend as 2nd Class Parents weekend and a few other years reunion as well so forget that.. crowds are not my thing.

Back to today.. I should find out today if I was selected to be a regional manager for our plant support group. Without going into a lot of detail, it is basically a way for us to have more of a career path in our company. Doing what I do is pretty straightforward for our progression. So the regional position just means I would keep doing what I do for my own plant but also help guide a few others that do what I do for their own plants. We'll see..

I kind of wish I was still sleeping by my right wrist is bugging me. I think it is just the turn in the weather. That made me sound a little old but its the truth. I have aches and pains like everyone else.

Volleyball season is coming up. The club season at least. I'm on the list for coaching again. I'm excited about it. I bought a few books on strategies and positioning and drills that will help. I also bought and already read the rule book. The USAV rules are a little different and I got my butt spanked last year by not knowing them cold. I now know I could have avoided the yellow card I got last year because the other team should never have been allowed to play in the first place. I am going to keep that rule book with me at all tournaments.....

Kids are great. We went to a neighbor's house the other night and made sugar cookies. She let us do the whole thing with the flour and the cut out shapes. The kids had a blast and so did I. william loved pushing his shapes all over the dough but not actually cutting out the cookie. Tomorrow we are going to a very big local festival called the Maple Leaf parade. Apparently its a nice parade and car show and all sorts of stuff. It will be cold in the morning but we will dress warm and take blankets.

10 minutes down.. about 30 more till I should go take a shower..

Good stuff

Tonight Mark came with me and the kids out to watch our neighbor's daughter play volleyball at the local high school. It was awesome that he wants to try to get out and will not hide at home. It is turning colder and he said he feels it around his head so we need to get him a hat. Especially this weekend becuase we are making plans to go watch the local Maple Leaf Parade. It will be colder than normal but the parade is supposed to be something to see!

We are doing really good. I admit I was a little afraid to tell the whole pathology of his 'growth'. I guess becuase I don't want people to feel like we made this whole thing up or something. That may be a silly feeling but that was what I felt. A lot of good people did wonderful things for us and I appreciated every single gesture. Even though it isn't cancer, Mark still had an abnormal mass in his head and it was still dangerous surgery. We just got very lucky that it turned out to be an abnormal mass and nothing more serious.

Tonight I have a smile on my face. I'm helping Mark break out of his 'everything is wrong with me' funk and we have plans to keep heading towards LIFE!

one more thing

my friend and i were talking and she pointed out i didn't share the full pathology report on my blog! this was probably the most startling thing of the day.. it was a birth defect. everything on the MRI and the location led the doctors to believe this was a classic astrocytoma. the pathology came back that it was not a tumor but an abnormality of the cells. basically instead of current brain cells turning abnormal, the cells themselves grew abnormally in the first place. he had this maybe since birth but there is no way to tell. the problems were all caused becuase this abnormal cell mass was pushing on an area of his brain that causes seizures. as he got older, the mass just got larger. also, his seizure threshold got lower so he was more susceptible to them.
so that is why it will never recur. the defect is gone and won't regrow.

and we're back

i'm not sure where to start today. mark and i had a pretty leisurely morning waking up late - 715! and having some breakfast. all the rain in missouri followed us to arkansas so it was pouring outside. we headed to the hospital early to walk over to the MRI suite and say hi to one of the nurses. she was the one who helped mark during his passing-out episode a month ago and it was her husband who got me from joplin to little rock. the guy at the counter remembered mark from that code blue.. she wasn't there but that was nice to walk around. mark is doing great walking :)

we went in and saw dr. yasargil. what a wonderful man and his wife diane. they were very pleased with mark's progress. they know he has concerns about his memory but they said that is normal and should get better as his brain essentially relearns how to store those memories. they said the pain in his legs was very rare to occur but they were glad he was getting better. the pathology came back and we are pleased to say everything was great. he will have no recurrence of this ever again. i also got pictures from before and after of the tumor and now the hole in his head. i'll scan those in and show everyone. it drives it home..

so.. we are home. we have to go back again in january but that's it. mark and i talked about his return to work. we're going to see how this week goes but if he keeps progressing than another week after that (so two weeks from now) we will see about getting him back for part time and work up to full time.

now we have the rest of our lives to live!! :)

we're here

well we are back in little rock. i hate to say it but the last few miles i had mark turn off the GPS because i know my way around already.

i want to say again how amazed i am at our lives right now. how is it we managed to meet up with dr yasargil??! i have met 2 people through facebook that have grade II astrocytomas or other gliomas that have been told their tumors are non-operable and to wait and watch. that could have been us very easily. i know each case is different and every tumor is unique but i just know in my heart that our doctor CAN do it. probably becuase he did do it for us.. there are just so many people out there that need help and this particular tumor is not common. it is deep brain surgery and not many doctors are trained on how to do it.

we are just so lucky. we are so lucky to have the friends and family we do. we are so lucky to have the support from all directions.. maybe it isn't the right word to say lucky though. luck implies that there is randomness to it all. the truth is that people are good and decent and want to help other people. we are unlucky actually to be in a position to need help. we just have been thrust into a scenario that the true goodness of people can shine through.

it is in no way an expectation that people help us but we are so grateful that we do get support. mark referenced our babysitter in his blog and he's right. she didn't have to keep our kids overnight tonight but she is and she wanted to do it. it made tonight so much easier to know the kids are right where they need to be. a girl i work with is staying at the house with the dogs. she didn't have to do that either but she wanted to do it. that saved us from having to kennel the doggies and i KNOW bear appreciates that.

mark and i talked a lot about our thoughts of tomorrow and his progress. he understands better that he is being really negative about his progress but he said 'i'm a glass is half empty kind of guy'. if you nail him down though he recognizes how far he's come and how much better he is. his big thing is his memory. he doesn't remember a lot. not only names but things that have happened and stuff he's done. that part scares him. in the long run though, it is still chump stuff compared to not being here at all.

he has never been through major surgery and never had long-term pain like this. and truthfully, this isn't long-term pain. it has been longer than anything he's ever experienced but this is not chronic for a lifetime. this will get better and go away in another bit of time. he just has never had to face it before. ask him again near christmas about the pain and the time for recovery and i bet he has a totally different point of view.

that was the big thing about our drive donw here. we talked about perspective. it is all about perspective. from my perspective our surgeon is the greatest person to ever touch a scalpel and the man can do anything. other poeple may not share that view.. i believe in my heart he can save the affects lives of the people i've met with brain tumors. they may not but since he saved my husband's life, i have that luxury of knowing the end result. mark being negative is all about perspective. i just told him to get a grip and really be honest about the situation instead of pessimistic.

i have lots of thoughts to share again. probably because we are back here in little rock and this tumor thing is in the forefront of life again. it looks like i have less to say when i have less stress :)

new wave

I think I've been in a holding pattern for the past few weeks with Mark getting a little better each day but not really knowing how he was progressing. Tomorrow we head back down to Little Rock for the first followup. The kids are staying overnight with the lady that watches them. That works out really well becuase they know her and well - its easy. I have some important things to do tomorrow and I'll leave work about 3pm. We will probably stop off for dinner on the way down. We are staying at the Markham Suites again.

I have a few questions for the doctor, I need to write these down. 1. Is it really gone? 2. What are the chances of recurrence at this point? 3. What is the long-term prognosis now? 4. Can we get a copy of the pathology report?

I guess I really want the doctor to tell me that this is over. I don't know that he will but I would love for him to say that.

Mark is feeling better each day. He is walking farther each day and doing more each day. His head feels fine most of the time. He is working on his memory. I bought him a Nintendo DSLite to play BrainAge - his first score was 74 which didn't make him feel so great.

So, I'll write again on Friday night after we get back about what we learned from the doctor.

Life

I haven't been writing much. A friend told me to keep doing my blog as long as it helps me. It really isn't for anyone else, just my way to vent. To be honest, I've been to tired to vent recently. Things are going pretty good but I'm just a little pooped!

Mark is doing well. I think he is going a little stir crazy in the house. He is doing more each day and walking longer each day but it is not enough for him. He would like to be better today and can't believe it is taking this long to heal. I constantly remind him that he just had MAJOR BRAIN SURGERY. There is no room for whining at this point. The good thing is that there is pain, there is recovery.. all that means there is life!

There is a new Kenny Chesney song out that I like that relates to that. Every day is another day which is more than we could have had if things had gone badly. I think a little perspective is in order.. feel free to let Mark know that.

We celebrated William's birthday on Sunday (and Monday). Therefore, he is pooping green. Pretty much any coloring in icing is non-digestible and goes out the way it goes in.. note to everyone about that tidbit of information. Thank you to everyone who made his birthday special :) Lizzie is struggling with the concept that William's birthday means the toys belong to him and first time out of the box, he really DOESN'T have to share.

I am now getting kicked in the ribs by Bear who doesn't believe that this bed belongs to anyone but him. Lazy dog. Seriously.. free to a good home. Any takers?

Since my mind isn't really that focused right now and I'm rambling, I'll turn this off.

New

Just a very short note. This weekend was alright, not great but not bad. The big thing is right now, Mark is still sleeping (or trying ot sleep) IN BED! This is this is the first time I've woken up and he hasn't been on the couch! I don't know if he got on the couch earlier in the night but all the times I woke up in the night, he was there. This is a huge thing. Usually his legs get knotted up and he is in pain and has to go to the couch around 2 or 3 AM!

I need to go get the kids but I wanted to share.

Its William's 2nd Birthday today :)

Better

Mark is really doing well although its hard to judge. Neither of us has been through major surgery like this before much less brain surgery. I really was pushing him early on to get out of bed and move and now that he is functional and moving around, he's motivating himself. He wants ot get better but we don't have a guage of how he compares to where he should be. That is basically what we want to know when we go to the doctor at the end of this week.

I took the kids to a local thing called Barnyard days. I went with a neighbor and her kids. We had fun but I can see how stuff like this will be MORE fun when the kids are a little older. William got scared of most of the animals and had a deathgrip with his legs on my hip. Lizzie was braver. Thier favorite animal by far was the bunnies though. William wanted ot pet it as long as I was there with him.

It is William's second birthday on Monday. I can't even begin to believe that. Not only becuase time has gone by so quickly but because he is still such a baby to me. He is kind of a runt for his age and he is so easy to cuddle. Lizzie at age 2 was already doing her whole alphabet, numbers to 10 and pretty much getting on her track of memorizing everything. So it isn't fair to William because by comparison, he isn't at that level but he is doing great for a 2 year old.

When we moved here he was about 5 months old and still in a carrier seat for infants. He couldn't crawl or move at all. He really didn't sleep much either.. that was the tough part. Moving with him was hard because we were all in the same hotel room and trying to get the two of them to sleep. It was a nightmare actually and that was a direct cause of Mark's initial seizures. Not that they caused his brain tumor but the lack of sleep becuase William wasn't sleeping made the seizure symptom show up.

Anyone want a dog? we'll keep ollie (unless someone wants a really great beagle and then he's yours). otherwise, bear is up for grabs.

Tired

I feel more tired this week than last week. I think part of it is not having any help anymore and the other part is fighting a sinus something. I've just been incredibly tired at work the last few days. It might also be due to lack of sleep. Mark hasn't been sleeping well which seems to be a common thing.

I don't have much to share tonight. Just an update on all of us. We're getting there and Mark is getting better. He feels bad becuase he wants to do more but I am not complaining and I don't want him to get wore out. I just want him to keep heading in the right direction like he is right now.

One of the bigger side effects we've seen so far is Mark is having a problem remembering names. So if he talks to you, don't get offended if he doesn't remember your name. Even people we are really close to like neighbors. He has been doing memory exercises to try to work on it.

Just saw a picture of him from in the hospital. He really has come so far in just 3 weeks. No matter what, life is good.

Motivation

Mark did a good thing today. He went to work and walked around just to say hi. I think that was awesome because he needs to get that boost that there is a job waiting for him and he needs to keep focusing on getting back to it. It was really great that he could also say thank you to so many people who literally gave so much to us.

The truth is the fear of dying is behind us now. The big things that were in our way are now gone which is a little wierd emotionally. I am very glad I have my husband and I know he is very happy to be here except it is wierd to let go of all of the fears. You gear up for the worst and try to prepare yourself for that possibility. Not that you want things ot end that way but your mind takes you to the bad what-ifs. Now that things turned out so much better, those fears are hard to lose.

I'm not really sure why that is. It is just not that easy to say 'its done'. I do think that if he didn't die, then we need to get living! We have our lives and we need to keep going with them. Not some major life change or philisophical shift of each moment is precious (it is but that isn't the point) kind of thing. I just feel that we made it over our hurdle, so lets ramp it up and get back on pace.

I do feel more inclined NOT to wait for things. I know we will wait a little for major family trips like Disney just becuase it makes sense. I don't want to wait to just sit with my kids and color with them or watch a movie with them. I want to take them outside and let them play.

I am not perfect by any means but I'm working on this whole letting-go mentality. If it is out of my control, then I am doing better about not focusing on it. If something is in my control though, I want to do my very best at it.

To change subjects, I really hope Mark finds a comfortable spot for sleeping. That is really a hard part yet. I just believe that if he can sleep and let his body rest, he will really get some good healing in.

Not bad

Today was my first day at work with Mark home alone. it wasn't too bad. i called once and he didn't answer which i didn't panic about. it wasn't until the second phone call home that was almost unanswered that i started to get worried. then he picked up and i was okay again.

i'm pretty tired right now. mark slept better than he has yet but i didn't. the wind blew the door shut, mark was still up and i just got little sleep. so right now i'm not seeing my screen too well.

we went for a walk after dinner which is a good habit. i want to do as much as mark can handle. not a long walk but it was outside. it is turning colder too so i want the kids to go out and play.

i had some deep thoughts to share but now they are gone. i'll remember them tomorrow.

oh yeah.. william peed twice in the potty at daycare today! (not one of my deep thoughts..)

The real test

I just got back from taking Mark's parents to the airport. It was good to have them here. They didn't feel like they did much while they were here - just hung out with Mark all week. That was perfect though becuase then I could focus on work this past week when I went back. Had they not been here, I would have panicked and called and come home to check on him. The first bit of time back from an absence is always overwhelming a little to get caught up and with stressing about Mark, I would have been completely swamped. As it was, I could really focus on getting my feet under me again and now I'm in a good place. Ask me about it next week and I'll probably deny I said that.

We are now without company and back to our little family. Although I will say that our little family has a lot of extensions to it after this adventure. I know there are good people in the world out there and if I need anything, there are plenty of hands waiting.

Mark is doing well. He has been out walking which is helping him feel better. We don't want to overdo it but he is ramping up his activities. This morning he got up and had breakfast with the kids without me! He told me to go back ot bed!

I think the leg pain will go away, it will just take time. Mark never had back problems before and this is purely a nerve issue not related (directly) to the cutting in his head. Now the only thing that might not go away is his left eyelid and eyebrow droop a little. That may be permanent but he can see out of the eye and it really isn't that noticeable. If that is what we end up with, then kudos.

So although we are alone at this point, I really don't feel that alone. Thank you for that.

Good day

Today was an awesome day. I said before the surgery that I can evaluate my emotional state by my productivity at work. If I use the same scale, then I am one step outside of Disneyland. Today was just a very productive day and it made me feel good. Mark is doing great too. He has been taking small walks with his parents and trying to have dinner together when I get home. I am not asking him to do the dinner thing, he wants to do it to see if he can. His legs still hurt him some but not too bad. It is concerning becuase this has been persisting.

I'll keep this short but as we take things one day at a time, today was an up day.

Hard

It was okay when I was home with Mark last week because the kids went to daycare and between Jim, JR and I we got everything done and it was kind of quiet. This week I'm back at work and its tough. Its only been 3 days and I'm trying to get into a groove. Work is work and didn't stop because our lives got turned upside down. I am trying to remember though that it is just work and it will always be there.. as it was while I was gone. I will catch back up but the first bit is always a rush, its like that even when you are out for even one day!

The kids are being good for the most part with me handling them. I admit I cheat sometimes and put a movie on. Tonight I was hoping to take them outside to play but it didn't happen. I've been pretty good though about coloring and working on letters and numbers instead of TV. William has developed a fear of the dark and spiders. He has 3 nightlights now and is not happy about dark places. I'm not sure where this came from but I give him hugs and kisses. When I pick him up though he asks to go back ot bed. Lizzie likes to be called Lizzie again.. She is doing pretty good with everything. She was working on her pretend doctor sticker tonight (for those who know Mickey Mouse Clubhouse you understand).

the dogs are pathetic as usual. Ollie is such a good dog. Stupid but good. He is so calm and docile. He's a lover.. Bear is still a spaz. He's a good dog too but just high strung. Combine that with smart and he's a pain in the butt. Literally.. he's bitten my butt before.

One last thing.. Mark's next appointment in Little Rock is on October 9th. It would be great if we could go down the night before instead of trying to do a one day down and back. I will need help with the kiddos overnight so I'm putting this out now to see what options are out there.

Bit better

Sorry if I freaked anyone out with my post this morning. It was just a long night. I found out today as I was taking Mark to the doctor that he doesn't remember any of it. Only vague pieces.. We talked over his pain and the outbursts he has had with our family doctor. He thinks that it could be related to the sleeping pills, Ambien. It has been known to cause side effects that are pretty crazy so he recommended stopping that immediately. We have another sleeping pill to try if he needs it.

Tonight though, no drugs. So far.. We need to get him off of everything. The doctor was very concerned about the amount of Tylenol he's been taking so we need to tone that one down. He gave us some other pain meds which should be more powerful yet easier on his liver. Our family doctor is awesome.

Mark showered by himself today (meaning I wasn't standing outside the door). He did a good job of cleaning up his scar. He wore a bandana out and probably will for a while. People do stare and its just one of those things.

Second day back at work.. crazy whirlwind of meetings. Tomorrow is a huge day at the plant so I will get very little else done. My boss (and everyone else too) is being very understanding about all of this. I am one to get my projects and tasks done on time or early so I personally feel like I need to kick things into high gear and get back on track.

Thank you agian to everyone who brought us dinners. We have been living on donated meals for the last week and a half. It has been a huge help to be able to pop one of those in the oven. REALLY GREAT FOOD TOO! I need recipes please.. all of them. I am very uncreative about casseroles and your food has been awesome and seems easy enough to prepare!

Long night

Last night was long and I don't know what to do about it. Mark was feeling great about 8:30pm and laying in bed. Then by 9:30-10:00 he starts complaining that he hurts all over and is just in a big fit about his pain. He took several different types of pain meds and a sleeping pill but he didn't go to sleep until well after midnight and then was up in the night.

I'm a very light sleeper so when he is up, I'm up. I feel bad becuase I was getting frustrated. He was fine one minute and then begging me to shoot him another minute. All the while, moaning and groaning which I have realized I'm not handling well.

I want him to get better, at his own pace but at the same time I think he is better than he thinks he is. Part of it is my overbearing sense of normalcy and wanting to get back to it. I am not in his shoes, I am not feeling his pain. I am a rational/logical kind of person and it just doesn't make sense to me so I fight against it.

I don't want him to be in pain. I don't want him to moan and groan but I feel very helpless.

Back to work

Today was my first day back at work. I was only gone 2 weeks so it wasn't like maternity leave. I also read most of my emails (contrary to my out of office note) while I was out but I didn't respond. The only thing I didn't get to do before I left was leave a proper "I'm not here" message on my voicemail. My last day at work didn't end up being the day I thought it would be..

So today was pretty good. Hectic though. A lot of well-wishes and prayers which made me feel loved. I have to get back in the groove and there are a lot of things I need to catch up on. The favorite phrase is 'I know you are busy..' which is true but I'm only busy if people give me things to do so bring it on! Tomorrow is meeting day. Back to back meetings all day until I leave and take Mark to our family doctor. I want to have him check up on Mark and see his scar, basically get a new baseline on where he is at.

I know I mentioned they took out the tumor but I wanted to say that before we left, the preliminary result was Mark's tumor was non-cancerous. For those who also wanted to know, it was about the size of a super bouncy ball. Put your first finger and thumb together in a circle at your thumbs' middle joint and that was about the size.

Not much else tonight. Watching the football game and the lightning flash outside. One day down.. a lifetime to go!

Shift change

When we got home from the hospital, my dad - Jim, and his girlfriend JR were already here. They have been here all week which has been a help. My dad has been feeling kind of sick this week which was a bummer. I think we wore JR out :) The cool thing is that with the technology of video webcams, we have been using a program called Skype for years. My kids recognized my dad and JR when they arrived even though they live in New Mexico. If anyone wants to keep in touch with people from long distances - get this program.

Anyway.. Mark is doing better. He is sitting in our recliner at some points and has been helping a little with the kids. He can't pick them up or anything but he can at least give them some attention when they come over to him. His pain seems to ramp up at night - anyone have any ideas? We are dosing him up with icy hot and a heavy duty pain pill and a sleeping pill to try to get through the night.

Today ended better than I thought it would. Teresa came back yesterday to ride with me to Tulsa to get her (and Mark's) parents from the airport. They are now staying with us this week. Well I got all gung ho about making a really nice dinner for everyone so I started a 5+ lb pork roast first thing this morning. Long about 10am we got a really wonderful smelling casserole from one neighbor. The next casserole came (also wonderfully yummy) around 130pm. So it occurs to me that 1. I shouldn't have cooked anything and 2. their flight gets in late and we wouldn't be getting back from Tulsa till like 8pm. I'm feeling rather dumb about this time. I should have saved the roast for tomorrow..

Well my dad and JR come over in the afternoon to watch the kids while we make the trip but my dad offers to drive instead which leaves me free to stay at home and be with the kids and finish the roast up. It actually was perfect because I got to serve the roast for dinner (awesome..), clean up the dishes and get the kids into bed before everyone got back!

Sorry this note isn't profound or includes deep revelations but not every day is like that.

Priorities

I've mentioned many times about how much this adventure has clarified some things for me. I think I need to be a little more specific. I understand what is important in life and that everything else that bugs me really needs to be let go. My uncle worries about me - ironically he worries about how much I worry about things. I can't say that I won't stop immediately and maybe not be able to not worry altogether (mainly becuase I'm too high strung for that) but I know what is important and what isn't.

What is important are my husband and my children, in that order. That may seem shocking but without my husband there would be no children and our love for each other makes our love for our children that much better. There will come a day when our children will grow up and leave the house and what will be left is just Mark and I so our relationship has to be first. Very odd way of looking at it but to last a lifetime, we have to look past the next 18 years. Now don't get me wrong, my children are my life and I love and protect them with everything I have.

The big change though is the lack of control. I couldn't stop this from happening to my husband and I couldn't do a damned thing about it once we knew what it was. For those of you who went to the beginning of my blog, you can tell how nuts I went about focusing on the kids since I had to do SOMETHING. I am a control-freak. Yes, pick yourself up off the floor for that revelation. This brain tumor was completely out of my control. I had to do a lot of waiting and I don't wait well. While I was waiting and praying for my husband's life, all that other crap I've devoted stress and energy to didn't matter. If it didn't matter at that minute, why the hell should it matter now.. so it doesn't.

I think I have learned some very good lessons from all of this. I have an amazing group of friends and family that I didn't even know existed or appreciated before now. I know that many people want to help us and help my children and they have their best interests at heart. I know that if given a chance or a need that comes up, I will do anything at all for anyone.

I appreciate things that I took for granted before or complained about before. If I never said thank you, I thank you now. It is a luxury to complain. I get it.

Life continues

Today was a good day. Although I'm a little sad. I have to go back to work at some point.. Not that this has been a vacation but it still isn't work :) Actually I have a fantastic job that I love. I am very fortunate to have one of those jobs that you look forward to every Monday.

Teresa is going to come back tomorrow afternoon. She and I will drive on Saturday to Tulsa to get Mark's (and Teresa's) parents. They are flying down from North Dakota and for their dad, this is a major deal. I am just glad they are coming and get to spend time with the kids. Mark will stay with them during the day and depending on how he does, I'll spend next week mostly at work. I say mostly becuase I still know that I will shift my hours a little just to make sure things are going okay at home.

Mark had a good day. JR really loosened up some stiffness for him. That helps. The more Mark is able to move on his own the more I can leave him alone with less worries.

You know.. its like a new life. Not that movie drama type of revelation but today just feels like the first time I can believe that we are going to be okay.

Quiet

I feel sort of silly now. We had so much emotion leading up to the surgery and then all the updates after the surgery. Now everything is quiet and slowed down. Mark has aches in his legs and he can't handle loud noises for his head. He is doing much better though and walked around all day without the walker.

I guess that is what happens after a major event, things seem so anti-climactic afterwards. The good thing is the emotions we went through made our love and devotion very clear. I love my husband more than anything. I push him hard (harder than he likes me to) about everything but he makes me want to be a better person right back too. I'm not just talking about the last week either.

There have been times in our marriage where I wondered if we were really going to make it and if we were worth all the drama we went through. I know I made the right choices to fight for our marriage instead of just leaving it. It is easy to walk away and in some cases it is BETTER to walk away but for us, we needed to fight for it and stay together.

I know I'm pushy and tough and pretty much a hardass (but only about certain things). There are a lot of reasons why I'm that way - way too many to list out. I think that part of that is what Mark likes about me though. I'm able to stand on my own two feet. Although he also gets mad at me when I am a wuss. For all my tough exterior, I'm a huge pansy for conflict. I hate conflict so I won't pick a fight or willingly go into uncomfortable situations. Those times, Mark tells me to sack up :)

Truly one of the benefits of all of this is alone time with the kids. I am the mom - Daddy is the favorite. Lizzie is a huge daddy's girl. Although I have to stop right now. She prefers Elizabeth. Between all the dogs and the kids, daddy is the most beloved person in this house. Now though, the kids can't go run and jump on daddy and the dogs have to stay away too. I get to spend more focused time with the kids and its nice. Not that daddy isn't still the favorite because he always will be (and yes I am jealous), but my kids and I get to have our time too.

So I'm going ot keep writing in this blog if no one minds. I think its nice to just put some of these thoughts out there. No one has to read them if you don't want to..

scar

i promised a picture of his scar so here it is. it is still pretty rough becuase we haven't cleaned it up yet. there is dried blood and betadyne all over it. the stitches are out though.

downtime

good morning!

it is so good to be home. mark had another rough night but i think we will get through it. it is his lower nerves that are giving him grief - not his head. all over the documentation is to not strain for anything.. it increases the intercranial pressure and will hurt him. well when they say not to strain, they mean it. so mark is having to work through all that and for someone who had 2 children plus stitches, i can sympathize with him on this one.

otherwise we are good. he is on the couch and i'm at home this week. jim and jr are here and helping out which is good. next week mark's parents are here so we have some help for a little while.

i'll update with more pictures. you need to see his scar..

home

we got home around 415 today. the morning at the doctor's office drove me nuts becuase i wanted to get on the road so bad. unfortunately mark had a terrible night trying to sleep and had bad pain this morning. he was really set back from yesterday but that happens. he is going ot have bad days and today was one of them. we got his stitches out which was good but they are still a little juicy. we have to leave everything alone for 2 more days before we should even try to clean anything.

the ride home was 4.5 hours but it took us about 5.5 with stops. mark was in bad pain. we first laid him down in the back all the way flat but that was terrible. then we tried across the back bench of seats which ended up doing better.

now we are home! the doggies sure missed us :) then i went with my dad to get the kids and that was the best ever. i really missed my children. i think they got SPOILED this week with aunt teresa but i don't blame her. they are wonderful kids.

my freezer is packed with fun stuff from concerned friends and anonymous supporters. thank you to EVERYONE who sent us stuff. it will take me a little bit to get through all of them but with company here the next two weeks, i really appreciate the fact that i don't have to cook. all of the food looks wonderful by the way.

anyway - i'll write more tomorrow but the bottom line is we are home. all of us :)

OUT!

mark has been discharged from the hospital. :) he is still using a walker to get around but he is doing great. he feels like a new man. in his words - today is the start of a new life! we are going to be at the hotel tonight and then go back to the clinic at 930 tomorrow morning to have his stitches removed. he has 25 on the outside. i have pictures but i can't upload them just yet.

we will head home after the stitches are taken out. :)

great day

today was a wonderful day. mark started out really trying and made a small trip around his room. by this evening, he ventured out of his room and down the hall a little way. he is still using the walker but you can see he is getting better.

we are really going to try to get out of the hospital tomorrow. its time.

its time

mark is making progress by strides today. i am going to push for us to be discharged tomorrow. we can spend the night in the hotel on sunday and then make the trek home on monday.

now that he is lucid and doing better.. i want out of here. i don't want to push him too fast or hard but we need to leave. its time to get living.

better

we have had a great morning. mark has been awake most of the morning and his pain levels are going down. it helped that he took the tylenol with codiene but the good thing is the tylenol is finally touching his pain - it isn't too much pain for the medicine. we have sat and talked a lot about how wonderful our family and friends are. we are both very amazed at the goodness of people.

he isn't really able to walk much yet but he is trying. he is eating more too which is awesome. we had a few day setback because of his legs but we are finally getting to where we were hoping to be a few days ago. it happens and things are getting better.

later on i'll see if he wants to write his own update and say hi.

just us

i have been back at the hospital for just over an hour now. mark has been sleeping. his left side is sore but pretty much okay. the right side is still pretty painful. his head is sore today too. the ice pack was filled a little full last night so it didn't sit right on his head. he is doing well though becuase the last time he took pain meds was almost 12 hours ago.

i'm a little apprehensive. again.. like having a newborn. all of my wonderful support system has to go back home. mark and i can get through anything together but it has been an immense help having everyone here. the biggest thing i think is to keep him moving and get him out of the bed. as much as possible i want him moving.

mark got to see the kids last night on skype. lizzie is so smart. her first question was 'are you lying down?' it was good though for them to see him and for him to see them. we don't live here.. we have a home to get back to. i miss my children.

end of day 4

well tonight is a first.. no one is staying at the hospital tongiht with mark. todd and pam have to leave early and i am going to try to sleep as well. today was tough but much better. we finally got a physical therapist to come in. that took some effort but he got mark a walker which is something. mark is trying a lot more to be active and stretch out his legs which will help. he is also eating and being more proactive about his own recovery.

he is still in pain but the area of pain is getting smaller. they are keeping him at least tomorrow if not through the whole weekend. if he makes as much progress tomorrow that he did today then we are going to be doing well.

mark wanted me to post the photos of him here. he wants everyone to see that he is doing okay.

pictures before surgery and after surgery

pictures before going and at the hospital

day 4 update 3

not much more exciting things than before.. he is just interacting more and being more himself. the doctors came by which was great. we are stretching his legs and moving his feet to get the blood going and get his legs to feel better. they are feeling better already. not great but better. the area that hurts him is getting smaller.

our goal for the end of the day is to get rinsed off. he needs a shower.. it will pretty much wipe him out for the rest of the day so i'm okay with waiting a little bit. i haven't been mentioning it and he hasn't been asking so he's been without pain meds for 7 hours now. i don't want him to get overwhelmed with pain but if he isn't asking for them, then he is okay.

day 4 update 2

he is sleeping again which is good. he is finally able to find a comfortable spot so he can really rest and sleep. i'm so grateful for todd and pam. they have been some of mark's best friends for years and i can say they have a special place in my heart too. aunt sue had to leave this morning but uncle john will be here through tomorrow. they have also been such a help and comfort. they are really helping to look after me.

everyone will be leaving tomorrow and it will be just mark and i. it is almost like having a newborn and coming home from the hospital. you have to just figure it out as you go. i am still very glad to be staying in the area. driving would be a dumb move..

day 4 update 1

good morning

and it is a good morning. todd stayed last night which i can't ever thank him enough for. mark seems to listen to todd. they had a good night with some really solid sleep. i got some sleep too which was great. when i saw mark first thing this mroning i could tell we were doing better. he tried sitting in a chair for a little bit last night and again this morning. he is trying to walk but not so great yet.

a physical therapist is going to come up and work with him on stretches and i massaged his butt for a while already. the problem is his ciatic nerve is terribly inflamed. the med student this morning was very helpful becuase she had 2 back surgeries herself. she said that it is like fire and there is nothing that you can do but let it calm down.

his attitude is better. much more my mark. :) still have a while to go with his mental state too but i saw some smiles this morning and he wanted a kiss.

day 3 update 4

i'll keep things honest, he's in pain. his head doesn't seem to hurt him as much as his hips. in fact the swelling in his face is already subsiding. his butt pain is very severe and he can't hardly walk because of it. the doctors say that he needs to move around to help circulate the blood but he can't stand to stand. i got him a massager which has been helping.

right now he also has a terrible attitude. he is just out of his mind with the pain and drugs. he hurts and he can't get it to stop hurting and he feels like he is helpless.

i'm very tired right now. today has been a long day. todd is staying with him tonight. my uncle is concerned about mark being discharged in this state. i agree with that. i'm going to be back over there before rounds and make sure they don't discharge him.

he is convinced that the nurses kept him in a bed that was broken and he had to lie flat and no one would help him adjust the bed. i saw him in recovery and i know that wasn't the case so i think he is fixated on the OR bed. he was lying down for hours and couldn't move.. i don't know that it makes a difference but i think it gives me leverage to tell him to stop blaming the nurses.

its just part of the rough road.

day 3 update 3

sorry its been a little bit. mark is doing better. he is trying to get out of bed more and i went and took a much needed nap. apparently while i was sleeping he ate some jello and cheetoes which was our second goal. also his hips are feeling better. pam said his left hip doesn't hurt at all now. that one didn't hurt as bad this whole time. maybe by tonight his right won't hurt either and he can really sleep.

so to get out of here we need him to eat, walk and poop. we got two of the three going.. walking not a lot but he can which is good. i'm going to try to have him sit in a chair for a little bit tonight to watch football.

i'm also going to see if i can get him to stop swearing..

day 3 update 2

not as many updates today.. lots of stuff going on. mark has been complaining of his lower back and legs. they did an ultrasound but found nothing. then the other senior neurosurgeon other than dr yasargil said it is due to pooling blood in his spinal fluid. the best thing is what hurts the most - to move. so he said get up and get living. and now that is my job to get him up and living. he got up into a chair but that didn't take too well. he decided to get up and get into the bathroom to pee which was awesome. he held onto the rolling table and wheeled himself (with help) into the bathroom. that was good. that was about all he could do so i'll leave him alone right now but we have a small goal - eating by 3pm.

i'm not playing fair. he didn't want to get out of bed so i took the picture that pam framed of all of us before we left and held it in front of his face and told him to get out of bed.

i'll let him rest for a little bit and then i'm getting him up again.

day 3 update 1

we've had a rough night. he got more pain meds around 4 am. he is begging for us to do something about the pain in his hips and his legs. that is worse than anything for him right now. the nurses don't know what to do and neither do i. i think it is just from being still but he has been very consistent from his recovery until now that his legs hurt. he can move them but not stand. i've been rubbing his thighs and butt to try to help. they have pressure cuffs on his legs for clots.

he's quiet now but he's hurting a bunch. its all worth it. that's what i keep telling him.

night 1 part 2

he is restless. his hips hurt and his legs are uncomfortable. i put a pillow between his knees to try to help. he is peeing which is good. no more catheter then. right now his lower half is hurting hm more than his head.

night 1

i guess it should be called night 2 but it is the first night i get to have with mark since the surgery. he is in a lot of pain. his head hurts but it seems to be manageable. what is killing him right now are his hips and his legs. i believe it is the bed and the way he is having to lie on his back most of the time. he just got his pain meds and something to sleep. i'm at the hospital with him. they have a couch that pulls out to a small bed. kind of like what west bend had for mark when i had the kids. i think this room is bigger than what i had then but i had a whirlpool tub..

i hope he gets a little rest. that is what his body needs. the left side of his face is swelling more. his eye is swelling more and the area is bruising up. the doctor said all patients have this. his left eye responded well earlier though so i am not worrying about any loss of movement from the surgery (it was a possibility).

i took my aunt and uncle out for sushi tonight. it is his favorite and its my birthday so todd and pam stayed here. it felt good to do something nice for people who are being so amazingly generous for us.

i know i've been very stressed the last month and a half and cranky more often than not. your patience and love have been amazing and i thank you for that. i apologize for any and all hurt feelings if i caused them.

my own update

everyone has been following the blog for mark's status but a few have asked how i'm doing so i thought i'd put a note out about that. i'm getting better. i didn't sleep monday night and tuesday was a very long day. when the doctor came out and said it went well and that the tumor was gone i was just in shock. we found out that he was moved to recovery and i got to see him. it was a little frightening to see him there. there is a smell in the recovery room i will never forget and i hope i never smell again. when i came out and saw the MASSIVE vase of roses i was confused. i wondered who would send flowers to mark already or if one of my dads sent them for my birthday.. then i read the card and they were from mark. he arranged to have them sent with a very wonderful note inside that made me cry. who would have ever thought that the patient would send his wife flowers while he was in surgery??

i did sleep last night but i woke up and called the recovery room right away. today has been better. it is good to hear him talk and move. he moved himself from one bed to the other in teh room today. he is still not quite himself yet but that's okay.. wait. supposed to update you on me.. basically i'm okay. i feel really good about the decision to keep him here. i think that is the right thing to do. otherwise i'm pretty good. i am better right now than i have been in about a month and a half.

i've been very overwhelmed by everyone's generosity and support. i can't believe how many people love my husband (and me) and care about us. thank you just doesn't cut it but its all i can say. i know people are thinking of us and praying for us and making us dinners so later on i don't have to... it is just amazing. this is humanity at its best. i only ask everyone reading not to lose this feeling. keep it.. live your life all the time this way.. help someone that needs helping and anyone will help you in return!

maybe our miracle is that we are touching so many other lives and making everyone appreciate their families a little more and being a little kinder to your fellow man. i know i will be an even more outspoken advocate of support and love to anyone that needs it in whatever way they need it..

day 2 update 5

i'm not sure if he is actually sleeping or just being quiet and still. i hope he is sleeping but his eyes pop open occasionally. he keeps complaining that his butt and his upper legs hurt - bad. that is more from the beds than anything else. he was in one position for so long and didn't move. the beds are also really hard on the lower back.. i remember that from my two pregnancies. i've been rubbing his legs and his butt to help with the pain. we may have gotten him into a better position though now with his legs elevated.

he's speaking clearly but doesn't always have the right words. it is nothing alarming but just watching it. i've seen the MRI and now there is a big hole in his head. feel FREE to use that phrase in any way you like when this is all over.. i know i'll be teasing him about it.

i am thinking the right thing is for me to keep mark in little rock until the first week appointment. i will ask to have that appointment on monday if at all possible. he is just in no shape to get in a car for 5 hours by friday. the hotel we are at is designed for this.. comfy but not flashy with the ability to just rest. i think it would be a mistake to push this and then be stuck in joplin if something goes bad.

teresa is going to stay until monday, jim and jr arrive on sunday and hopefully we will be home on monday.

day 2 update 4

we are sitting in his own hospital room now. we being me, todd and pam. mark is on his way up. it is a new hospital and the rooms are huge and all private. there is a seperate section devoted to neurology patients which also is nice. the room number is H818.

he is doing okay. he doesn't really want to be touched which is fine. they don't want to overload him on pain meds if he is sleeping which is most of the time right now. he has an ice pack on his head that the nurse said does almost as much good as any pain meds.

more to come..

day 2 update 3

we just saw dr yasargil and mark. dr yasargil had us walk with him to the MRI suite. he is such a wonderful doctor. he was talking about the brain and about the hospital itself. i got to see mark briefly before the MRI and he said a few more words. dr yasargil came out pretty early in the MRI and was pleased with what he saw. they are watching his fluid intake/output close. he is doing well enough for there to be a transfer order from the recovery room to his own room by the time we got back. he got a little sick when they moved him from the MRI bed back to his bed but when i saw him again as we walked from MRI he said he felt better.

so we are back in the recovery waiting room. we are waiting on the nurse to either tell us where he is being moved to or the next visiting time which is at 1pm.

day 2 update 2

todd, pam and i just saw mark again. he looks a little worse today. there is more swelling on the side of his head. he was a little more coherent though and spoke more words. he was convinced there were no nurses and they were all gone. i think he is a little confused. he is in and out of conciousness. he keeps saying his head hurts and his legs hurt. they have pressure cuffs on his legs to prevent blood clots.

pretty much he is a house of pain. they haven't done the MRI yet but should do it in the next few hours. we will wait here at least until the next visiting at 1. hopefully dr yasargil will get some results first though and come talk to us. the best case is later on today he is moved to a private room but it wouldn't be unexpected for him to be in recovery through today and maybe tonight.

day 2 update 1

i just called the recovery room. he has been sleeping most of the night. he wasn't quite as restless becuase he finally slept which is good. they will take him down to MRI soon and the doctors are making their rounds now. they will check out his labs and his MRI and see if he needs to stay in recovery another night, go to ICU or go to a room. dr yasargil said most of his patients do not go to the ICU. if he is like he was yesterday when i saw him, he may have to stay in recovery. while he is in recovery i only get to see him for about 10 minutes at a time about every 3 hours.

sleep is good for him. he hasn't slept very well in over a month so now he gets to catch back up.

update 4

i got to see him again. the nurses are very nice and let me in earlier than the scheduled visiting time. he was still mostly out of it but opened his eyes more this time. he responded to my voice and talked to me a little (few words). he is in a ton of pain now but it is a good pain. it is the pain of healing. the next few nights/days will be tough but it should be the worst of it.

he did start shaking a little and the nurse watched him. she thinks it is still the anesthetic. he was doped up for 6 hours which is a long time. he got more pain meds and i told him good night.

i won't get to see him again until 9am tomorrow morning. they should do the next MRI first thing. i'll call to find out where he is. he won't be put in a room until later in the morning.

so far the nurses think he looks pretty good for a head surgery. he has good color and not much swelling yet. he really hates the catheter though.. really hates it. really.. really...

the only thing of concern is the words. he isn't using all the right words yet. it might still be part of him being doped up or not but we'll know in the next few days.

i don't know if i'll write again tonight. i'm kind of wrung out right now. i feel like i can breathe again but i'm not ready to be overly happy until i get him a little farther along :) not that i'm not estatic about the low-grade diagnosis!!!

more updates tomorrow but so far, today is the start of the rest of our lives.

update 3

okay.. finally saw him. he looks good! better than i expected actually. he has a bandage on his head and his temple is swollen. apparently he has been very vocal at the nurse about his catheter and his dry mouth. translation.. he has been swearing up a storm. he was passed out when i saw him which she said wasn't fair because he's been so vocal. i'm waiting here to see if he wakes up at all and if i can help calm him down. he had to be restrained earlier because he was so belligerent.

he's not a good patient..

the good thing is he is awake and moving his extremities. his words are not coming right yet though. the nurse wants me to talk to him and see how he does talking with me. dr yasargil stopped by and said that tomorrow it will be better. he will have another mri tomorrow to see if anything is left after the surgery.

after i got back from seeing him in the recovery room, there was a big (HUGE) bouquet of flowers in the waiting room for me - from mark. he planned it with some of my family to make sure i felt loved while he was in surgery. i am so in love with him.

so more good news.. need to see how his words progress but don't worry, he can still swear.

update 2

i'm kind of numb right now. dr yasargil just came out and said the tumor is gone. he said it went well and it is all gone. he said it looked like a low grade tumor which is the best news because that means no radiation! i think i'm just in shock because it is the best news we could have possibly had.

now we have to wait a few more hours to see him. then we need to deal with any after effects of the surgery. but we are in the best position we could have been at this point.

now the buracracy of the VA is showing up.. they don't want to do the histology of the tumor by a UAMS person. i think i understood him correctly when the doctor said someone is coming from fayetteville to do it. whatever.. i don't care.

i get to keep him and for that there are no words.

update 1

mark asked me to go eat and uncle john is helping to watch out for me. he took me down to the cafeteria which is one building over and i had a great omlette. well they gave me a pager (similar to a restaurant pager) to carry today to give me updates. just as we were leaving the cafeteria my pager goes off! so i leave and start running between buildings to get back ot the waiting room. my purse keeps falling off my shoulder and my sweats (mark's old sweats with no drawstring) keep falling off my ass. so i'm holding my purse with one hand and my sweats with the other running down the hallway. i'm sure i looked dumb but i didn't particularly care..

they just wanted me to know his surgery started at 930.. right now his head is open and that crap is being removed.

Starting

I just left Mark. They gave him some drugs and wheeled him out. He is feeling better today than he has in a week which is good.

Not much else to say.. he's headed in now.

Getting ready

I know a lot of people will be checking this so I'll update as much as I can through the day.

We are getting ready right now. Showering and stuff.. Mark and I didn't sleep for crap but that isn't a shock. We have to be at the hospital by 530 but his surgery doesn't start until about 830.

So... when something else happens I will let everyone know.

Thank you so much for loving my family and caring about us. There are no words that adequately express it.
Lori

Getting ready

We shaved his head today. I don't have the pictures yet but I did it. It isn't down to shiny bald.. more like peach fuzz. Actually he looks younger now. If it weren't for the tired look in his eyes that is..

Today was a decent day. No major emotional outbursts or anything. We just had fun with the kids. Todd and Pam are here. They are friends of Mark's from a long time ago. They have been great to hang out with and play with William and Elizabeth.

The kids don't know what is going on. I think Lizzie gets something is up but we haven't directly told them becuase what is the point - they are little kids. People say kids know but at the same time, it is a conversation that gets us nowhere. They will just know mommy and daddy are going on a trip and aunt teresa is taking care of them. Lizzie didn't want to touch Mark's head or help cut his hair. William did help and then wanted to 'pet it' when we were done.

I am kind of numb right now. I have been more emotional before this point but right now I'm truly numb. I don't want to be at this point but we need to get through this to the surgery. I just want to be a week from now and be home again with Mark. At least then it will be over!

Right now I feel really tired, like if I drag my feet hard enough, tomorrow won't come. Even though we focus on the best, we prepare for the worst. Tomorrow, Mark will put the kids down for their naps and say goodbye. The terrible thing would be if that was the last goodbye. It is an incredibly cherished moment though because so many people don't get that last goodbye.

I don't want to think about it right now so I'm just going to go to bed. Not sure if I'll sleep but I need to rest.

Last Day

Tomorrow is our last day at home before we head down to Little Rock. Not that it should be made that big of a deal but after this our sense of 'normal' will be changed. Hopefully normal down the road comes back close to normal today.

Tomorrow we will shave Mark's head. Not that we necessarily have to but the hospital will shave the area that will be cut on which is a section in the front left portion of his head. We want the kids to see us shave his head so they are not shocked when we come home. He will have bandages and be swollen but it will still be like they saw him when we left.

Not much else to say right now. Niether one of us is sleeping well - even when we BOTH take sleeping pills.. I can see why I can't sleep much - the dog is snoring. Ollie is snuggled half under the blankets right up next to me with his head on part of a pillow. He is one of hte most pathetic dogs ever.

Anyway.. tomorrow will come and then the next. Time is kind of funny that way.

Whirlwind

My adventure started just over 24 hours ago. Mark passed out during his MRI yesterday and they called a code blue on him. They almost paddled his heart becuase they thought he was really in trouble, part of the issue was they had just dilated his eyes for his vision test. He saw a neurosurgeon (not ours but another one) who wanted to keep him at the hospital last night becuase he was alone. Not happening.. so he did agree not to drive and went back to the hotel. The nurse that was with him this whole time had chatted with him beforehand and understood that he was here alone and not driving meant not getting to go home before surgery. Her husband happens to be an avid pilot and knows people who fly for the Angel Flight program. That is a charter flight program that helps people get to appointments and surgeries for free.

None of these guys were available but Dusty (the pilot) called his friend Bill who is a flight instructor. Bill flies around various planes that belong to other people to get them where they want to go. Bill called a gentleman named Robert who owned the plane and asked him if they could borrow his plane to come and get me. The plan was originally to fly Mark home after his tests today. When we talked about it, it made more sense for me to fly there and get him and his truck home.

So they flew up from Little Rock to Joplin and I got on a plane back down south. We landed about an hour and a half later. If you think about the people just in that scenario who went out of their way to give a shit about perfect strangers and help us - it is amazing. There are no words to be able to say thank you. It doesn't compare to the gratitude I feel. I was so glad to be there last night and today. We talked about it and the only way we know to repay the favor in any way is to do for others all that we can do. Basically pay it forward.. there will be others out there that need our help and we will gladly give it.

Mark was/is doing rough. He has had pain in his head all day and congestion. The congestion we are all sharing. In fact, I went home on Thursday because I was almost unable to move becuase I was so exhausted and feeling bad. I got a nap and some claritin and ended up getting on a plane. He got through all of his tests though so we are set for Thursday.

Our doctor is truly the best in the world. If you googled him, you know I'm not exaggerating. So if this doesn't go well, it is not due to a lack of experience or knowledge. He has every confidence in what he's doing and that Mark will be fine. He has such a way to tell us things that is makes me happy every time. I feel hope which I didn't get with any other doctor.

Thank you for everyone for your support. I know there are a lot of prayers being said for us right now - keep going. Something is sure helping us..

Change in plans

I am in little rock right now. i am going to make this quick becuase we need to get started this morning.

first of all, i can't put it into words what happened last night. so many people went out of their way to help us and get me here. it is truly a testament to the goodness of humanity.

mark isn't doing so well. his head hurts this morning. he is fighting a sinus thing which is not good because that might push his surgery. we will know more today. today is full of tests and seeing the neurosurgeon again and then driving home.

the whole purpose is to get mark home to see the kids. it is that important.

Alone

where to begin. i should be sleeping right now but i just can't. my stomach hurts and my head hurts. today was actually a wonderful day. i was rather productive at work which is always a measure to me of how i'm doing emotionally. then my neighbor had a ladies get-together which turned out to be a small surprise birthday party for me. that made me feel very loved. now i'm laying in bed alone and its getting to me a little - okay a lot.

mark went down to little rock for his pre-op testing. nothing major so i didn't go with him - we do have two kids to think about. its just the little things that get to you though. since he's gone and it will have to be done anyway, i moved the alarm clock to my side of the bed. it hasn't been there in a long time. the good thing is that one day it will move back.. mark is faster on the draw for the snooze button than i am.

i think it is just a moment that shows me what might happen one day with mark gone. in our case unfortunately the odds are a little higher than walking out and getting hit by a bus. the surgery is absolutely necessary or else this crap will kill him.

i don't know which truly scares me more, if he were to die or if he were to be not the same mentally. physically we can deal with, it would be a challenge but we can handle that. if he is forever mentally not the same, that is a little tougher. if he doesn't remember me or our children. the what-ifs are endless. actually i do know what scares me more - death. i don't want to lose him. i can deal with anything else.

i've never had to face death before. i am so lucky in my life. my grandmother is the only one close to me that has died and i didn't even get to be there for her funeral. i've never gone to one. i don't want to think that the first one is the person i love the most in life. i'm scared as hell of raising our children by myself. i know that i 'can' but i don't WANT to.

how do you explain to your children how wonderful their father is? I can't tell them how much he loves them and puts all of us first for everything. how he wants nothing more in life than to be a good father. you can't put that into words that come close to it.

its so hard. everyone wants thier chance to see mark and to be supportive. all i want is him to myself. i dont' want to share. i feel like our time is so precious because it is what i know, this is our life now.. soon it will change in some way. i want to live in the now as much as possible and not have to let a moment go. i'm being selfish.

so half a box of tissues later maybe now i will sleep..

Not so bad..

Today was a good day! Mark had a wonderful idea to go to the Tulsa Aquarium this morning out of the blue. We normally don't just go and do stuff like that.. today was fun. William got scared a lot of the time - especially of the sharks. Then he would want to 'pet it' with stuff like piranhas. He clung to me all day which was really snuggly for me but at the same time, tiring as crap on my arm. Elizabeth was a lot more brave and walked around looking at everything. She touched the starfish and probably would have touched a stingray if we had gotten there at the right time.

I am constantly amazed at my husband. I definetly got a good one... on the way home, the kids were falling asleep which was good but Elizabeth's seat isn't that great for napping like William's chair. So Mark hops in the back in a rather uncomfortable position just so she could nap on his lap and be comfortable. I don't think a lot of dads would do that for 2 hours and then hold the sauce while their daughter ate her lunch afterwards. He is such a wonderful father.

I worked out on our new treadmill tonight. It was super-expensive but it is the quality we were looking for. I feel good but I also realize how I've been lazy these last few months. Not making excuses but the gym we belong too also got so crowded it was ridiculous. We are such homebodies that staying at our house in our basement with our equipment is exactly what makes Mark and I happy.

So tomorrow starts a very fast stretch of days. Mark is reading up on astrocytomas again so it is kind of killing my good mood. I'll stop now because this is just going to go downhill.

Tears

I've been crying a lot more these last two days. Not really by choice but just to relieve the emotional pressure I think. Mark and I talked tonight about trying to make sure neither of us wallow in self-pity as we go through this. It is really frustrating for everyone when we do that.. I wouldn't say I'm in self-pity but I know that during his recovery, Mark may get there because of the added pain and recovery he will have to go through.

This weekend we have some things planned to get our basement a little more complete. Today was the official DONE day. No more people coming into my house! Now we have to get it cleaned and ready for company. We are going to get a treadmill. One of our goals has always been to get a gym quality treadmill at home. That was why we built a workout section of our basement! I think it will help to have it around for Mark's recovery so we need to it this weekend. I also need to lose 10 lbs.. I've gotten lazy.

This week will be tough. Mark is off from work with things he needs to do. Thursday and Friday he will be in Little Rock for pre-op stuff. It just keeps reminding me we have a major countdown going on.

I am NOT a patient person. I am someone who likes to know things. This I don't know. I don't know anything! I've been driving myself nuts with information on the internet but that only goes so far. I want to know how long my husband will be in surgery, my husband's recovery, what long term affects will happen to my family.. everyone else's story is fine but I want to know about us. Maybe this does count as self-pity.. I just want my husband home and well.

Enough rambling..

Countdown

Okay. Surgery is set for first thing Tuesday, 8 September. Mark and I will head down on Monday sometime. Best case, we will be coming home Friday or Saturday.

Mark's sister Teresa is staying with the kids. Please give her any and all support you can. She will do great with them but it is always nice to have a helping hand.

For anyone that is thinking about helping out with meals, please make them in some kind of disposable container like aluminum because I will never get your tupperware back to you and please make them freezable. I will need stuff for a while so if I can pull it out and throw it in the oven that would be great!

Work is super busy but I'm also very distracted. I'm trying hard to stay focused but today was not my best. I did do some good things I just know I need to do more.

Mark will take off after this week to get ready a little for this. The reality of all of this hit him pretty hard this weekend. I can't imagine being in his shoes but truthfully he can't understand mine either. If this was me or one of the kids, he would not know what to do either.

At this point, just trying to stay afloat...

Emotions

I believe the next two weeks will be incredibly fast and incredibly tough. The fear is starting to grip my heart again. This past week I was doing really good. The trip to see Dr. Yasargil made me feel more confident about what we are going into. Now.. not so much. The enormity of it is hard to get your head around.

I had a great weekend in Kansas City. I admit I needed an escape from our reality. I haven't gone out like that in years and I probably won't again for years. When I woke up this morning, it occurred to me I will be in another hotel in about two weeks for a completely different reason.

Its hard with the kids. We are both so emotional and on edge and the kids are little kids. They are GREAT kids but they are 3 and almost 2.. that makes for short tempers and unhappy everyone. We are both going to try to work on that.

On a different note, the basement is 97% complete! The remaining thing is the cabinets. The installers didn't finish the job - literally. Missing door hardware and a missing drawer and the bathroom countertop is a point of contention. The rest is awesome. Needs a very deep cleaning but is awesome.. I need to send out pictures.

Now.. back to work tomorrow.

Just going with the flow

So we are just having to wait now. We have to get approvals from Fayetteville for all the pre-surgery testing Dr. Yasargil wants done and the surgery itself. Shouldn't be too big of a deal but just have to get it all scheduled and get it done. In the mean time, we are actually pretty busy. This weekend I am going out for a girl's weekend in Kansas City. It will be a great time just to go have an extended slumber party with alcohol. Then we have one weekend at the end of August that isn't quite packed yet and then Labor day. Mark is going home to North Dakota over Labor Day to visit his parents before the surgery. Then we should be in surgery!

I no longer have this terrible pressure on my chest every second of the day now. The thought of the worst case scenario that we were facing was just crushing. I would be at work just scared of the future. Not that the diagnosis is different - Mark still has a low-grade Astrocytoma. The difference now is the discussion we had with the doctor. When he said his patients have 80% non-recurrence I couldn't even believe it. Mark may fall into the 20% but I'm not going to think about that. Right now, we get this out of his head and this may be it! That kind of knowledge lets me breathe again.

If it hadn't been the world's best micro-neurosurgeon who said that, I wouldn't probably be in this frame of mind. The truth is, this doctor designed the tools and procedures that all other neurosurgeons use to do brain surgery. If you google him, he has credentials a mile long and his word is pretty much gospel in this area.

I will get more nervous as we get closer to the surgery. We have to leave our kids for an overnight - something we have never done together. We still have to be a little prepared for the worst case scenario but the likelyhood of that is a lot less than we thought. I hope no one has to go through the conversations and emotions that I've gone through over the last month.

We are so fortunate that our nightmare may end. There are so many people that do not get that. We are so fortunate that this is Mark and not one of the children. I can't even fathom that.

Not quite

I spoke a little too soon. Mark had a terrible headache yesterday that extended through the night. His headache was so bad he let me drive his truck. For those of you who don't understand the significance of this - he NEVER lets me drive his truck. So last night was no sleep again for both of us. He seems a little better today. The 3+ hour naps we all just took also didn't hurt.

This is why we need to get this crap out of his head. The intense pressure and headaches are getting worse. I know I sounded very upbeat yesterday and I am still upbeat but the reality is, this is still surgery on his brain tumor. To reach it they have to cut a hole about the size of a fist in his head and slide tools in his head.

More than likely he will survive the surgery itself but we still have to keep any infections and such at bay. Not trying to be a worry-wart but I am just keeping things in perspective. We are not out of the woods with this by a long shot.

At least we have a timeframe now which is good.

I wish i had my camera right now. William pulled my bra off the dirty clothes pile and is trying to stretch it on his chest. Now Mark is helping him..

Sorry for the side tangent but we still do have fun.

Wow.

What a difference 24 hours can make. Today we started again at 5 am with a drive to Little Rock. It is still a pretty but very long trip to do both ways in one day. We arrived and had a bit of a scare because the office hadn't recorded the VA paperwork yet. It was all there though and we were ready to go. We had a 1030 appointment and got there about 950. We waited in the lobby until about 1115. Then we got to go to an appointment room and waited there until almost 1. When we were finally seen, we were both pretty toasted and the day hadn't really started yet.

It was worth the wait.

The doctor is an 80-year old man whose nurse is his wife. 2 other doctors were in the room as well consulting. Basically he explained about the brain and what the area is that is being affected. He described how he will go between sections of the brain to remove the tumor - not do surgery on the brain. He was very clear on that part which I personally think is a fantastic attitude.

He said a few points that I will just summarize here:

• This is the most ideal of tumors becuase of its compact size and location. It has not spread out to other sections of his brain.
• He will feel much better after this is out. The pressure and headaches should all go away.
• He will probably experience some personality changes but mostly for the better. He should be much more relaxed after this is out.
• This WILL NOT affect his life expectancy at this point. :) The doctor said 80% of his patients do not have recurrence of the tumors at all.
• 3-4 days in the hospital for recovery then he goes home
• His left eye will swell up and not funciton right for a little while becuase of the nerves in the area that will be irritated during surgery

Then he said some things about this type of surgery that surprised us:

• The majority of people he sees that have this type of tumor are "intelligent". Now Mark is having a great deal of fun with that.
• There are no other neurosurgeons in the country that are qualified to do this surgery which is why he is a professor and teaching doctors how to do this.
• Pretty much the fact that Dr. McDonald admitted that he couldn't do this surgery was a huge honest point on his part

He was ready to do surgery next week but his wife and Mark renegotiated that so we can prepare coverage for the kids. We will be in surgery the first of September, basically over my birthday. That point bothers Mark but not me - lets get this done.

Right now, I am very tired but rather happy. I feel like a huge shining light has come in a very dark situation. Instead of having to think about how to explain how wonderful their father was to my children, he gets to be here and BE their wonderful father.

I will be scared the day of surgery but tonight I think I will finally sleep.