Wednesday, May 1, 2013
Sappy Stuff
This afternoon I was typing a few e-mails trying to let people know what was going on. While doing that I heard that Cindy had shown up out of the blue! (at least it was completely unexpected to me - I'm sure I'm going to get some of these details wrong, but I hope I at least get the over-all picture close enough) She teaches at SUU, this week is finals week, and in all the years she's been teaching there she has never given a scan-tron final. For some reason a few weeks ago, she wrote up a scan-tron final and had her assistant print it up and make all the arrangements. She was supposed to read a few names at graduation, but she found someone else to do that for her and she showed up at our house! I'm not entirely sure what prompted her to change the way she did her final this year, but I have a pretty good guess :)
Honestly, I have been overly humbled to watch as all sorts of pieces from a totally random collection of 'pies' all fit together to make things happen these last two days that I never could have imagined happening. I remember reading my cousin Laurie's blog (razzzberries.blogspot.com) about this same sort of thing, and wondering what that would feel like. I had never had anything remotely close to an experience like the ones she seemed to describe almost daily, but for the first time I think I am starting to get it.
I have vivid memories of driving down the road with Mark in the car. He's totally out of it - no clue what's going on, his parents were out of town, my phone was dying and all I could think was 'now what? I have no one left to call, I am going to have to face this alone - at least for a little while, and maybe for a long while.' It was a crushing thought to feel so totally alone. Thankfully, that didn't last too long. I wasn't given time to dwell on it - I had to focus on driving safely and getting us to the hospital alive and on making sure Mark was ok.
Then came the first call.
Then the second.
Then back-up arrived. Julibeth has been awesome through this. She was my lifesaver in so many ways on Monday. I'm not sure I'll ever be able to express how much having her there meant to me. She brought me stuff I hadn't even thought about needing, she called everyone so I didn't have to, arranged for Mark to have a blessing, thought of things I wouldn't have considered and overall was basically a perfect person to have there during those early moments.
It wasn't long before I had heard from people I never expected to hear from, and was offered help in more ways and from more people than was possible to accept. Mark is on the prayer roll of many temples (one of my friends in FL even offered to start calling all the temples she could find online - and then I found out that some of his cousins had been doing that exact thing! He's could easily be on a few of them several times over). Much of his family have been fasting for him today, and many, many more than that have been praying for him.
We have had a shocking number of visitors (the nursing staff even commented at how many people we had in his room this afternoon/evening - maybe they'll give us a bigger room for the second half of his stay... :) ). Family and friends whom I haven't seen in a while, some I've seen just this month, some just this week. It has been awesome to witness the outpouring of support.
For the first while of all this going on, I was completely unable to process what was happening in any kind of a normal way. Apparently when most people heard 'growth in the brain' their first reaction was 'that's not good'. Mine was 'ok... what does that mean? what do we do next? what am I dealing with?' I think some of the beginning reactions were due to shock a little bit - although my complete inability to grasp that what was going on could even be a bad thing makes me wonder if it was shock or denial or something else all together (it is possible shock from the stroke symptoms had kicked in already). I wasn't shocked by the news. The news didn't mean anything to me. Literally, nothing. It was as if the doctors were telling me that he had a cold and needed to take some decongestants before going to bed - both pieces of news would have had the same effect on me at that point. (well, one would have prompted me to take him home, and this one had me following an ambulance through town to meet him at another hospital... but mentally both were equally good or bad at that point).
I'm sure some people are watching me through this and are shocked that I'm not reacting more. I've been telling people I'm still in a bit of shock because otherwise they look at me funny, but I'm pretty sure that's not true anymore (it certainly was at first, but I think that has largely worn off). I am actually making an effort to not think about things that aren't right in front of me. Speculating about some possible future (any kind of future at all - good or bad) has been something I have tried not to allow myself to think about. Yet. I am dealing with the here and now, and that is about as much mental/emotional energy as I have. I will deal with the future either when the future becomes the present or when the present doesn't take up so much energy and I have some to spare to give to the future again. Giving over much needed energy to something I have no control over, and can't really do anything to change, only robs the present of the energy I need now. Once this settles down, I'll probably sit down and have a super good cry (instead of the small bursts that I'm getting now whenever I can't stop the future from sneaking into my thoughts). But by then, I expect that the future will be clearer and there will be less uncertainty to add to my list of things to cry about. :)
The Next Day (aka Matt's Birthday) - Mostly a Waiting Game and Lots of Technical Details...
We got to talk to two doctors this morning, both neurosurgeons. They said basically the same thing (shocking, I know) but each gave slightly different details about the growth and what surgery would look like. Rather than try to keep track of who said what, I'll summarize (and add in a few details that the assistant came back later and filled us in on - she also let us ask a million and three questions, so we got lots more info from her about possible outcomes/further treatments and potential successes/failures of surgery)
So, it's a growth (I think they called it a tumor - not quite sure about that). It's about the size of a small fist - more my sized fist than Mark's - and it's about as center in the brain as you can get. It started near/on the thalamus and grew up from there into the spinal ventricles. There are a few different kinds it can be, but they won't know which kind until they take it out and biopsy it. It can either be a fast or slow growing mass and it can either be benign or aggressive. Based on how big it is and the fact that he hasn't had any symptoms until very recently they're thinking it grew slowly, over many years. Apparently the brain doesn't much like rapid change and if it had grown quickly, he should have had more symptoms before now. I like the sound of slow growth (I'm not sure I should, but when the doctors talked about it, it sounded like it was good thing, so therefore I like it).
Depending on how it's growing lower down in his brain - where it's right on the thalamus - will determine how the rest of the plan will work. If there is a definitive difference between where the tumor ends and the brain begins, they'll take it all out and recovery should be fairly easy (again, depending on wether it's a fast or slow growing mass and wether it comes back). If the mass is spreading 'tentacles' into the thalamus then they will get what they can and once they have to start guessing what's tumor and what's brain, they'll stop. Apparently the thalamus is a 'collection point' for a lot of what the brain does, and they don't like to mess with that - it can cause all sorts of problems to start poking around in that part of the brain. If they have to leave some in, then depending on what type of growth pattern it has, they would do either radiation or chemo beginning 2-4 weeks out to get the rest of it (they wait to let the incision heal - faster growing ones start sooner, slower growing ones get to recover longer). Radiation would be about 4 weeks of treatment Monday thru Friday for about half an hour a day (except the first day when they get all the settings and stuff set up). Radiation to the brain tends to have few side effects except for appetite (the assistant who gave us all this info wasn't really familiar with all those details because she's more involved with the surgery part and not so much the follow up part, so she knows the 'how's but not so much of the 'what happens then's of that part). Chemo is incredibly targeted and is just a pill that he would take. It wouldn't even cause hair loss (although I don't think he's too worried about that part :) ).
Again - none of what happens next will be known until after the surgery. Any/all/none of these could be an option - or something all together different. It all depends on how much they get out, and what kind of growth it is and how he reacts to the surgery...
One thing is known for certain: Scans. Lots of them. Pretty much forever more. They'll scan his brain again at 3 months, 6 months, 9 months (that might have been 12 months) and then yearly after that pretty much forever. She did say that if he goes for 15 or so years with out further growths they might give him a break on the scans - like he might be able to take a year off... :)
The assistant doesn't really like to call brain masses cancer, because of how typical cancer acts. Typical cancer when it metastasizes, will spread to other parts of the body - kidneys, lungs, lymph nodes, brain, etc. Masses that start in the brain don't really spread past the blood brain barrier. Tumors in the brain can be 'aggressive' but they stay in the brain. The only reason this is relevant is because it means that unless there is good reason to look for cancer elsewhere (symptoms or lab work), they're not even going to look for it. So, we can pretty much rest assured that what we've seen so far is all there is to see on that front.
Once surgery is done, he'll go to ICU for the first day or two - standard procedure for cranial operations - and do a bit of recovery there. Once he's well enough they'll move him back to a regular room where he'll finish out his stay. I think we're expecting about a week (probably a day or so less) of a stay until he's ready to come home - again, depending on how surgery goes. There is a chance that he could end up needing some kind of rehab, but from what I've gathered it's not a super likely chance, so I'm going with him not needing that until they tell me otherwise.
The assistant did mention that for the first while - at least a month - patients are often really tired and it can take up to 6 months for what they consider a complete recovery (not sure what all that entails, but probably a return to before surgery levels of energy at least - not sure if that means he'll be back to normal in 6 months or just done with as much recovering as can be expected in 6 months. Guess we'll find out :) )
For the surgery, they are going to cut a hole right on the top of his head and cut it fairly central from front to back (kind of like how you would part a girls hair to do pig tails). I don't know how big that incision will be, but that's where it will be. They will spread the two halves of the brain apart and they will have to cut about 1/3 of the corpus callosum (the part of the brain that connects the two halves) and then start digging out tumor.
They are taking him down a bit early - about 6:00 or so - to do some prep work for the surgery. They'll shave his head and put on some 'stickers' that faintly resemble squishy life savers (at least that's how it was described them to me - I'll have pictures tomorrow and if I can find a way to get them online I'll post them). They use these as markers and once they're on they will do a 'mini MRI' and use the info they gather from that as a sort of digital map of his brain. Once in the operating room they have some kind of gadget they use in conjunction with the markers to allow them to see the brain better and basically use them to help them see how and where they are working. I'm not super clear on all the specific technical details, but that's the picture I got from how they've explained it.
He is second on the list for surgery tomorrow (or really, I guess it's later this morning, since it's technically now 'tomorrow') so they're expecting to get him around 11 or so. Surgery can take anywhere from 2-4 hours (the surgeon said 2-3, the assistant said based on the location and size that 3-4 was more likely, we'll just wait and see what happens - not much I can do to chance any of that, so whatever happens we will have to be ok with).
Ok, technical boring part done. Today was actually pretty awesome - at least as awesome as it can be sitting in a hospital room waiting to find out what's about to happen to the rest of your life with no real way to speed up the waiting game. My mom flew into town and we got to see her for a bit before she went to relieve Doug who had been watching our kids for us. Doug has been awesome! He was in the middle of moving into a new apartment when all this started, and instead of ...unpacking, grocery shopping, showering, changing clothes, planning his next semester of school (that starts today!)... he stayed with our kids and put off all of that so we could be here. He and Nate got the kids in bed last night, then Doug spent the night at the house, got the kids off to school, dealt with Annie who would have nothing to do with him... You know you're loved when a college student with much better things to do would do all that for you, for nothing more than knowing that we needed help. So, Mom went to go take over so he could spend time doing some much needed - and much delayed - organizing of his life.
Cindy showed up, out of the blue! I had been worried about finding a way to have someone watch the kids so that Mom could be here at the hospital while Mark was in surgery. I had basically given up trying and was going to be grateful that she was willing to watch the kids for us and call that good. But Cindy showing up was an answer to prayers! She will watch the kids for us! And apparently Annie will actually interact with her, so that's a good thing... (Annie actually kept choosing Aunt Grandma over me when they came to visit this afternoon - I was trying to get a hug or kiss from her, but she kept walking past me and straight to Cindy. It might have had something to do with the Oreo's she was holding, but I doubt it...)
We had all kinds of visitors here today. Cousins we both have and haven't seen in a while, friends we know and love but weren't expecting them to take time out of their day to come by, church members just checking in to see if we needed anything. This evening was a bit crazy with the room almost to overflowing with family and friends. We took advantage of the men in the room and had blessings all around - Mark, me, his parents and sister. It's amazing to watch men using their priesthood to help others. We were glad everyone came, and glad everyone stayed, but it was also nice to have a quite evening to ourselves for a bit - possibly our last 'normal' one for a while.
Random coincidence! I got a call from my visiting teacher checking in on us to see how we were doing. It came up in conversation that her mother also had recently had brain surgery and needed a bit of follow up due to some fluid build up. I had heard a story very similar to that when the doctor was talking about other surgeries he had done with growths in a similar spot and size to Mark's. Turns out the woman the doctor was talking about is the same woman who is also my visiting teacher's mother. And she's having surgery the same day and the same hospital and with the same doctors as Mark. We figured out that my visiting teacher's mother is the one who is going into surgery before Mark. She sure has her plate full of brain surgeries this week...
So, that's about all that's been going on here. Learning what's happening tomorrow and getting visits from lots of people. Not an overly busy day in terms of new things happening - I'm going to call that a good thing at this point.
Further updates probably won't happen until after surgery and we've had a chance to chat with the surgeon to see how things went - maybe even talk to Mark and see how he's doing. I'm thinking sometime mid to late afternoon... If there's anything urgent I'll send out an e-mail update (or more likely, have Mom do it), otherwise 'no news is good news'.
So, it's a growth (I think they called it a tumor - not quite sure about that). It's about the size of a small fist - more my sized fist than Mark's - and it's about as center in the brain as you can get. It started near/on the thalamus and grew up from there into the spinal ventricles. There are a few different kinds it can be, but they won't know which kind until they take it out and biopsy it. It can either be a fast or slow growing mass and it can either be benign or aggressive. Based on how big it is and the fact that he hasn't had any symptoms until very recently they're thinking it grew slowly, over many years. Apparently the brain doesn't much like rapid change and if it had grown quickly, he should have had more symptoms before now. I like the sound of slow growth (I'm not sure I should, but when the doctors talked about it, it sounded like it was good thing, so therefore I like it).
Depending on how it's growing lower down in his brain - where it's right on the thalamus - will determine how the rest of the plan will work. If there is a definitive difference between where the tumor ends and the brain begins, they'll take it all out and recovery should be fairly easy (again, depending on wether it's a fast or slow growing mass and wether it comes back). If the mass is spreading 'tentacles' into the thalamus then they will get what they can and once they have to start guessing what's tumor and what's brain, they'll stop. Apparently the thalamus is a 'collection point' for a lot of what the brain does, and they don't like to mess with that - it can cause all sorts of problems to start poking around in that part of the brain. If they have to leave some in, then depending on what type of growth pattern it has, they would do either radiation or chemo beginning 2-4 weeks out to get the rest of it (they wait to let the incision heal - faster growing ones start sooner, slower growing ones get to recover longer). Radiation would be about 4 weeks of treatment Monday thru Friday for about half an hour a day (except the first day when they get all the settings and stuff set up). Radiation to the brain tends to have few side effects except for appetite (the assistant who gave us all this info wasn't really familiar with all those details because she's more involved with the surgery part and not so much the follow up part, so she knows the 'how's but not so much of the 'what happens then's of that part). Chemo is incredibly targeted and is just a pill that he would take. It wouldn't even cause hair loss (although I don't think he's too worried about that part :) ).
Again - none of what happens next will be known until after the surgery. Any/all/none of these could be an option - or something all together different. It all depends on how much they get out, and what kind of growth it is and how he reacts to the surgery...
One thing is known for certain: Scans. Lots of them. Pretty much forever more. They'll scan his brain again at 3 months, 6 months, 9 months (that might have been 12 months) and then yearly after that pretty much forever. She did say that if he goes for 15 or so years with out further growths they might give him a break on the scans - like he might be able to take a year off... :)
The assistant doesn't really like to call brain masses cancer, because of how typical cancer acts. Typical cancer when it metastasizes, will spread to other parts of the body - kidneys, lungs, lymph nodes, brain, etc. Masses that start in the brain don't really spread past the blood brain barrier. Tumors in the brain can be 'aggressive' but they stay in the brain. The only reason this is relevant is because it means that unless there is good reason to look for cancer elsewhere (symptoms or lab work), they're not even going to look for it. So, we can pretty much rest assured that what we've seen so far is all there is to see on that front.
Once surgery is done, he'll go to ICU for the first day or two - standard procedure for cranial operations - and do a bit of recovery there. Once he's well enough they'll move him back to a regular room where he'll finish out his stay. I think we're expecting about a week (probably a day or so less) of a stay until he's ready to come home - again, depending on how surgery goes. There is a chance that he could end up needing some kind of rehab, but from what I've gathered it's not a super likely chance, so I'm going with him not needing that until they tell me otherwise.
The assistant did mention that for the first while - at least a month - patients are often really tired and it can take up to 6 months for what they consider a complete recovery (not sure what all that entails, but probably a return to before surgery levels of energy at least - not sure if that means he'll be back to normal in 6 months or just done with as much recovering as can be expected in 6 months. Guess we'll find out :) )
For the surgery, they are going to cut a hole right on the top of his head and cut it fairly central from front to back (kind of like how you would part a girls hair to do pig tails). I don't know how big that incision will be, but that's where it will be. They will spread the two halves of the brain apart and they will have to cut about 1/3 of the corpus callosum (the part of the brain that connects the two halves) and then start digging out tumor.
They are taking him down a bit early - about 6:00 or so - to do some prep work for the surgery. They'll shave his head and put on some 'stickers' that faintly resemble squishy life savers (at least that's how it was described them to me - I'll have pictures tomorrow and if I can find a way to get them online I'll post them). They use these as markers and once they're on they will do a 'mini MRI' and use the info they gather from that as a sort of digital map of his brain. Once in the operating room they have some kind of gadget they use in conjunction with the markers to allow them to see the brain better and basically use them to help them see how and where they are working. I'm not super clear on all the specific technical details, but that's the picture I got from how they've explained it.
He is second on the list for surgery tomorrow (or really, I guess it's later this morning, since it's technically now 'tomorrow') so they're expecting to get him around 11 or so. Surgery can take anywhere from 2-4 hours (the surgeon said 2-3, the assistant said based on the location and size that 3-4 was more likely, we'll just wait and see what happens - not much I can do to chance any of that, so whatever happens we will have to be ok with).
Ok, technical boring part done. Today was actually pretty awesome - at least as awesome as it can be sitting in a hospital room waiting to find out what's about to happen to the rest of your life with no real way to speed up the waiting game. My mom flew into town and we got to see her for a bit before she went to relieve Doug who had been watching our kids for us. Doug has been awesome! He was in the middle of moving into a new apartment when all this started, and instead of ...unpacking, grocery shopping, showering, changing clothes, planning his next semester of school (that starts today!)... he stayed with our kids and put off all of that so we could be here. He and Nate got the kids in bed last night, then Doug spent the night at the house, got the kids off to school, dealt with Annie who would have nothing to do with him... You know you're loved when a college student with much better things to do would do all that for you, for nothing more than knowing that we needed help. So, Mom went to go take over so he could spend time doing some much needed - and much delayed - organizing of his life.
Cindy showed up, out of the blue! I had been worried about finding a way to have someone watch the kids so that Mom could be here at the hospital while Mark was in surgery. I had basically given up trying and was going to be grateful that she was willing to watch the kids for us and call that good. But Cindy showing up was an answer to prayers! She will watch the kids for us! And apparently Annie will actually interact with her, so that's a good thing... (Annie actually kept choosing Aunt Grandma over me when they came to visit this afternoon - I was trying to get a hug or kiss from her, but she kept walking past me and straight to Cindy. It might have had something to do with the Oreo's she was holding, but I doubt it...)
We had all kinds of visitors here today. Cousins we both have and haven't seen in a while, friends we know and love but weren't expecting them to take time out of their day to come by, church members just checking in to see if we needed anything. This evening was a bit crazy with the room almost to overflowing with family and friends. We took advantage of the men in the room and had blessings all around - Mark, me, his parents and sister. It's amazing to watch men using their priesthood to help others. We were glad everyone came, and glad everyone stayed, but it was also nice to have a quite evening to ourselves for a bit - possibly our last 'normal' one for a while.
Random coincidence! I got a call from my visiting teacher checking in on us to see how we were doing. It came up in conversation that her mother also had recently had brain surgery and needed a bit of follow up due to some fluid build up. I had heard a story very similar to that when the doctor was talking about other surgeries he had done with growths in a similar spot and size to Mark's. Turns out the woman the doctor was talking about is the same woman who is also my visiting teacher's mother. And she's having surgery the same day and the same hospital and with the same doctors as Mark. We figured out that my visiting teacher's mother is the one who is going into surgery before Mark. She sure has her plate full of brain surgeries this week...
So, that's about all that's been going on here. Learning what's happening tomorrow and getting visits from lots of people. Not an overly busy day in terms of new things happening - I'm going to call that a good thing at this point.
Further updates probably won't happen until after surgery and we've had a chance to chat with the surgeon to see how things went - maybe even talk to Mark and see how he's doing. I'm thinking sometime mid to late afternoon... If there's anything urgent I'll send out an e-mail update (or more likely, have Mom do it), otherwise 'no news is good news'.
Tuesday, April 30, 2013
My Birthday - the short version
I had a fun birthday! I got lots of gifts I wasn't expecting - like spending the whole day with Mark in the hospital (at least we were together!) And well wishes and visits from people I know and love, but don't always see.
Yesterday afternoon - after my 16 week OB checkup (everything was fine there) I noticed Mark was acting and talking weird. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. So ... I drove him straight to the ER (Doug was there and about to leave, but awesomely volunteered to stay and watch the kids for me). The ER did all kinds of tests to check for a stroke - EKG, CT, Angiogram, Chest X-ray, I think - and came back with "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit distracted). He did say that the CT made it look like it wasn't the aggressive type of growth (that could change with further testing, but I'm taking that good news for now! :) )
We talked to a neurosurgeon, he scheduled an MRI - we've had that done and will get the results in the morning when he comes in. All he was really able to tell us without the MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. We'll know more in a few hours...
(I had this up on Facebook, but decided my in-laws might be scandalized by how much info I was sharing so publicly - so I took it down and decided to put it up here.)
Yesterday afternoon - after my 16 week OB checkup (everything was fine there) I noticed Mark was acting and talking weird. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. So ... I drove him straight to the ER (Doug was there and about to leave, but awesomely volunteered to stay and watch the kids for me). The ER did all kinds of tests to check for a stroke - EKG, CT, Angiogram, Chest X-ray, I think - and came back with "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit distracted). He did say that the CT made it look like it wasn't the aggressive type of growth (that could change with further testing, but I'm taking that good news for now! :) )
We talked to a neurosurgeon, he scheduled an MRI - we've had that done and will get the results in the morning when he comes in. All he was really able to tell us without the MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. We'll know more in a few hours...
(I had this up on Facebook, but decided my in-laws might be scandalized by how much info I was sharing so publicly - so I took it down and decided to put it up here.)
A Birthday I Probably Won't Forget!
I had a fun birthday! I got lots of gifts I wasn't expecting - like spending the whole day with Mark in the hospital (at least we were together!) And well wishes and visits from people I know and love, but don't always see.
Yesterday afternoon - after ordering a windshield for our van so it can pass inspection and get registered before the end of the month - yeah, tomorrow - and making an appointment for that afternoon for them to install it - and after my 16 week OB checkup (everything was fine there)... After all that:
I woke up from a nap and was about to head out to get the windshield installed (never did do that) and asked Mark what he had been up too. He told me he didn't know (how does he not know?! I was a bit put out - it's ok to not tell me, but this was a cheap out in my opinion). I was going to drop it, but I was a bit bugged at being blown off so easily, so I pushed a bit more. 'Were you standing, sitting, lying down, inside, outside, awake, asleep?' He still came back with 'I don't know.' I wish I could say that at this point I was concerned, but it wasn't until I noticed Mark was talking weird that I started really paying attention to him and how he was doing. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. I wondered if he had hit his head and checked his pupils for dilation issues - no indication there of anything obvious. I kept questioning him. I was a bit hesitant because I was sure I was over-reacting. I asked him the same questions over and over. He had to look at his watch to tell me the day. I asked him the year, and he'd check his watch - he never did answer that one for me though - not until much later. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. Doug was just finishing up moving from his temporary/weekend home in our basement to his new apartment and came back in the house for something. I asked him if he knew what had happened to Mark, hoping he knew of a head injury or something. He pointed to the couch - I knew where he was... Doug came in and talked to Mark for a bit and agreed with me that he was not normal. One of the friends who helped him move was the daughter of a nurse, so we called her mother and got her opinion - straight to the ER. Doug was on his way out - the car had even started driving away - but he volunteered to watch the kids for me. He was my hero of the afternoon! (truly!) I then had freedom to give full attention to Mark and know that I didn't need to worry about the kids too.
Once in the car - not even to the elementary school - Mark opened the car door and threw up. He kept hold of a bucket I scrounged up the rest of the way. On the way to the ER I called Mark's parents. They live close and I figured they could come be there with me and not be too emotional (so that I could be emotional). Turns out they were in south eastern Utah for a funeral. I decided I should focus on driving and left the rest of phone call making until I was in the ER with Mark. That, and my phone was almost dead and I was pretty sure I was going to want that to be useful later (Mark's phone was also almost dead - how does it always seem to work out that way?). And I was bit distracted by Mark himself - I had asked him how he was doing and he said he didn't feel good. He asked where we were going and I told him 'the hospital'. He said 'oh, I don't feel good. Where are we going?' I decided it wasn't worth it to me to have to answer that question more than the 4 times I already had, so I stopped asking how he was doing and he was so confused and not feeling well that he didn't ask again until we got out of the car to head into the ER.
The ER took him straight back - no official check in, no waiting - and gave him his own huge room, which quickly filled up with staff. They did all kinds of tests to check for a stroke - EKG, CT, Angiogram, and Chest X-ray, I think - I might not have been made aware of all the tests, or if I was made aware, I might have been distracted.
Julibeth showed up at some point in all of that (she actually called while I was walking into the hospital from the parking lot with Mark). It was good to have someone else there! And she brought a phone charger! She made all kinds of calls for me while we were there. We even called Mark's internship to let them know he wouldn't make it (it was an adventure trying to figure out how to call them - Mark had no memory of how to make that call, so we guessed based on the numbers in his phone). We couldn't get a live person so I left a message (apparently I called myself Mark's husband - yeah, a bit flustered was I). JB also arranged for someone from our old ward, who Mark had gown up knowing, to come give him a blessing. My mom volunteered to hop on a plane right that minute. I still didn't know what I was dealing with, so it seemed silly to me to have her hop on a plane just to find out it was no big deal. I told her to wait until I knew more about what was going on.
Mark's memory was still not ok. He could tell the doctor where he was (he had to look around first), but when he was asked all kinds of questions about day/month/year/president, he came up blank. He did get the president right a few minutes later... After they had run most of the tests they left us alone for a bit and we got to talk to him (in between many various and sundry calls). I kept asking him what month it was and he guessed June. For the year: 2012. We lived on Geneva, and no memory of where our kids go to school (he was good with the kids names by then, so I moved onto harder/more recent questions). He later guessed summer of 2012 - again. I gave up most of the last year as lost to him for the time being. He also realized he had missed a few months and since we were joking about how long it took Mr. Political to remember the President, he asked to be updated (at least in the political sphere). We told him Obama had been re-elected (he was surprised, as if he didn't know that), and then we mentioned the bombings in Boston. He then pretty quickly spit out the last names of the suspects. I wasn't sure how to take that. Our kids he struggles with, but an unpronounceable last name of some random people in the news recently - that he remembers... :) Have no fear, I duly gave him a hard time about that (he didn't quite get why he was being given a hard time - seeing as how he didn't remember forgetting, but he laughed along with it anyway).
The doctor came back with the test results: "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is fairly large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit out of it - I do know that his index finger and thumb did not meet, by more than an inch, but that's all I remember from that encounter). He did say that the CT made it look like it wasn't the aggressive type of growth (I'm keeping in mind that this could change with further testing, but I'm taking that good news for now! :) ). He did say it was growing at ... some unknown rate ... so it would likely need to come out or need some kind of treatment. They gave him some morphine for his headache and some zophran for his nausea.
The nurse offered me a box of tissues and said it was totally understandable that I should need them. I didn't get why. I think I was in shock. I still didn't really get what I was dealing with. (I still don't actually - I'm very grateful for that. I'm slowly realizing it's a big deal and will take a lot longer than an afternoon and a few pills to fix - if it even can be... but I am incredibly grateful that the realization is coming slowly and not all at once. I can handle slow. I've made a conscious effort to not think about things until I know what I need to think about - it's only mostly working). My mom called asking for an update, I was still in shock/denial/uncertainty/something and told her I still didn't know what we were dealing with or if it would be good for her to be here or not... She finally just told me she was coming. I might still be debating otherwise. I'm telling ya, the realization is coming slowly... Doug also told me he was willing to stay with the kids until Mom got here to help - it's awesome to actually see how blessed I actually am.
They then prepared us to transfer to Utah Valley (the nurse-mom from the phone, I don't know her name, had recommended Timp for our insurance, but apparently Utah Valley is better able to deal with what Mark has). They gave me a CD with what I assume are pictures of the scans he had - I'll look into that more later. Mark got to ride in an ambulance - not sure if he remembers any of it though. :) So we were in two ERs in one afternoon! Good times! They gave him more zophran for nausea and some steroids for the brain growth. While at Utah Valley he started to remember more. He eventually came to realize it was my birthday all on his own. I considered that a very good sign. He remembered the day (Monday), why the weekend was significant (Nate graduated and we had a half dozen house guests), all kinds of stuff! He also started asking what had happened. Apparently he still has no memory of how/why he we thought it necessary to bring him here. He remembers being here, and what's happened since ('I have a thing growing in my head'), but not the part where he was out of it. I've actually had to tell him the story more than once.
Mark's Aunt Emily came to be there with us. That was good. She works at the hospital and is well aware of how things work and who the doctors are. She was a great asset (and her son's school had been evacuated that morning from a bomb threat - she had an adventurous day even without being with us!). She stayed with us until Mark's parents were able to make it back from the funeral that had taken them out of town. At some point our bishop showed up in the ER. It was rather confusing, seeing as how I hadn't had time or even remembered to tell anyone in the ward what was going on. Turns out the family that JB had asked to give Mark a blessing was old college roommates and still good friends with a lady in our ward (the primary secretary) - who happens to be next door neighbors with my visiting teacher - who she happened to tell about it - and who had visited us just the night before. I got a phone call pretty quick (minutes after finding out about the growth), but also quickly forgot about it until the bishop showed up. I'm guessing that's how word got back to him. Not long after the bishop left, Mark got a phone call from the Elder's Quorum President (Mark had been unable to handle phone calls earlier so I had taken his phone from him in case someone called). They had chatted at church on Sunday and he wanted to let me know he was praying for us, and asked me to keep him updated and let him know if we needed anything.
We later talked to a neurosurgeon - after he finally got out of surgery (really, it didn't seem that long, but the clock kept saying it was later than I thought it was - all afternoon/evening - pretty sure from 2:00 to 9:00 was only an hour or two in my head). All he was really able to tell us without an MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. He ordered an MRI and admitted us to the hospital. Mark got moved upstairs (Aunt Nila was here by then) and settled into his new room. His parents showed up little bit later, along with Nate, Uncle Tony and Aunt Becky. Everyone stayed for a bit and we realized it was late, so all of the aunts and uncles went home. Nate, JB and Mark's parents stayed. Nate was awesome and offered to bring us some stuff from home. Yup, I'm surrounded by life savers who don't even know it.
We had thought the MRI was not going to happen until the morning, but they called in a tech and had it done just after 10:00 so the Doc could have the results when he came in. Mark's parents and Nate all stayed until Mark got back (JB had to go get Ethan and put him in bed). Mark has been sleeping since he got back (except when they wake him up to check on him). I have been sitting in this uncomfortable chair, with a sore throat, and, surprisingly, a thing or two on my mind, trying to sleep. It hasn't really worked. I think I got a combined hour, maybe two! :)
The doc should be here sometime soon (it's 6:45 now) and we'll know more then. I'm still hoping Mark will come home today and come back for a day or so of treatment sometime later and then all will be well and back to normal! (hey, a girl can dream, right?)
Yesterday afternoon - after ordering a windshield for our van so it can pass inspection and get registered before the end of the month - yeah, tomorrow - and making an appointment for that afternoon for them to install it - and after my 16 week OB checkup (everything was fine there)... After all that:
I woke up from a nap and was about to head out to get the windshield installed (never did do that) and asked Mark what he had been up too. He told me he didn't know (how does he not know?! I was a bit put out - it's ok to not tell me, but this was a cheap out in my opinion). I was going to drop it, but I was a bit bugged at being blown off so easily, so I pushed a bit more. 'Were you standing, sitting, lying down, inside, outside, awake, asleep?' He still came back with 'I don't know.' I wish I could say that at this point I was concerned, but it wasn't until I noticed Mark was talking weird that I started really paying attention to him and how he was doing. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. I wondered if he had hit his head and checked his pupils for dilation issues - no indication there of anything obvious. I kept questioning him. I was a bit hesitant because I was sure I was over-reacting. I asked him the same questions over and over. He had to look at his watch to tell me the day. I asked him the year, and he'd check his watch - he never did answer that one for me though - not until much later. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. Doug was just finishing up moving from his temporary/weekend home in our basement to his new apartment and came back in the house for something. I asked him if he knew what had happened to Mark, hoping he knew of a head injury or something. He pointed to the couch - I knew where he was... Doug came in and talked to Mark for a bit and agreed with me that he was not normal. One of the friends who helped him move was the daughter of a nurse, so we called her mother and got her opinion - straight to the ER. Doug was on his way out - the car had even started driving away - but he volunteered to watch the kids for me. He was my hero of the afternoon! (truly!) I then had freedom to give full attention to Mark and know that I didn't need to worry about the kids too.
Once in the car - not even to the elementary school - Mark opened the car door and threw up. He kept hold of a bucket I scrounged up the rest of the way. On the way to the ER I called Mark's parents. They live close and I figured they could come be there with me and not be too emotional (so that I could be emotional). Turns out they were in south eastern Utah for a funeral. I decided I should focus on driving and left the rest of phone call making until I was in the ER with Mark. That, and my phone was almost dead and I was pretty sure I was going to want that to be useful later (Mark's phone was also almost dead - how does it always seem to work out that way?). And I was bit distracted by Mark himself - I had asked him how he was doing and he said he didn't feel good. He asked where we were going and I told him 'the hospital'. He said 'oh, I don't feel good. Where are we going?' I decided it wasn't worth it to me to have to answer that question more than the 4 times I already had, so I stopped asking how he was doing and he was so confused and not feeling well that he didn't ask again until we got out of the car to head into the ER.
The ER took him straight back - no official check in, no waiting - and gave him his own huge room, which quickly filled up with staff. They did all kinds of tests to check for a stroke - EKG, CT, Angiogram, and Chest X-ray, I think - I might not have been made aware of all the tests, or if I was made aware, I might have been distracted.
Julibeth showed up at some point in all of that (she actually called while I was walking into the hospital from the parking lot with Mark). It was good to have someone else there! And she brought a phone charger! She made all kinds of calls for me while we were there. We even called Mark's internship to let them know he wouldn't make it (it was an adventure trying to figure out how to call them - Mark had no memory of how to make that call, so we guessed based on the numbers in his phone). We couldn't get a live person so I left a message (apparently I called myself Mark's husband - yeah, a bit flustered was I). JB also arranged for someone from our old ward, who Mark had gown up knowing, to come give him a blessing. My mom volunteered to hop on a plane right that minute. I still didn't know what I was dealing with, so it seemed silly to me to have her hop on a plane just to find out it was no big deal. I told her to wait until I knew more about what was going on.
Mark's memory was still not ok. He could tell the doctor where he was (he had to look around first), but when he was asked all kinds of questions about day/month/year/president, he came up blank. He did get the president right a few minutes later... After they had run most of the tests they left us alone for a bit and we got to talk to him (in between many various and sundry calls). I kept asking him what month it was and he guessed June. For the year: 2012. We lived on Geneva, and no memory of where our kids go to school (he was good with the kids names by then, so I moved onto harder/more recent questions). He later guessed summer of 2012 - again. I gave up most of the last year as lost to him for the time being. He also realized he had missed a few months and since we were joking about how long it took Mr. Political to remember the President, he asked to be updated (at least in the political sphere). We told him Obama had been re-elected (he was surprised, as if he didn't know that), and then we mentioned the bombings in Boston. He then pretty quickly spit out the last names of the suspects. I wasn't sure how to take that. Our kids he struggles with, but an unpronounceable last name of some random people in the news recently - that he remembers... :) Have no fear, I duly gave him a hard time about that (he didn't quite get why he was being given a hard time - seeing as how he didn't remember forgetting, but he laughed along with it anyway).
The doctor came back with the test results: "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is fairly large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit out of it - I do know that his index finger and thumb did not meet, by more than an inch, but that's all I remember from that encounter). He did say that the CT made it look like it wasn't the aggressive type of growth (I'm keeping in mind that this could change with further testing, but I'm taking that good news for now! :) ). He did say it was growing at ... some unknown rate ... so it would likely need to come out or need some kind of treatment. They gave him some morphine for his headache and some zophran for his nausea.
The nurse offered me a box of tissues and said it was totally understandable that I should need them. I didn't get why. I think I was in shock. I still didn't really get what I was dealing with. (I still don't actually - I'm very grateful for that. I'm slowly realizing it's a big deal and will take a lot longer than an afternoon and a few pills to fix - if it even can be... but I am incredibly grateful that the realization is coming slowly and not all at once. I can handle slow. I've made a conscious effort to not think about things until I know what I need to think about - it's only mostly working). My mom called asking for an update, I was still in shock/denial/uncertainty/something and told her I still didn't know what we were dealing with or if it would be good for her to be here or not... She finally just told me she was coming. I might still be debating otherwise. I'm telling ya, the realization is coming slowly... Doug also told me he was willing to stay with the kids until Mom got here to help - it's awesome to actually see how blessed I actually am.
They then prepared us to transfer to Utah Valley (the nurse-mom from the phone, I don't know her name, had recommended Timp for our insurance, but apparently Utah Valley is better able to deal with what Mark has). They gave me a CD with what I assume are pictures of the scans he had - I'll look into that more later. Mark got to ride in an ambulance - not sure if he remembers any of it though. :) So we were in two ERs in one afternoon! Good times! They gave him more zophran for nausea and some steroids for the brain growth. While at Utah Valley he started to remember more. He eventually came to realize it was my birthday all on his own. I considered that a very good sign. He remembered the day (Monday), why the weekend was significant (Nate graduated and we had a half dozen house guests), all kinds of stuff! He also started asking what had happened. Apparently he still has no memory of how/why he we thought it necessary to bring him here. He remembers being here, and what's happened since ('I have a thing growing in my head'), but not the part where he was out of it. I've actually had to tell him the story more than once.
Mark's Aunt Emily came to be there with us. That was good. She works at the hospital and is well aware of how things work and who the doctors are. She was a great asset (and her son's school had been evacuated that morning from a bomb threat - she had an adventurous day even without being with us!). She stayed with us until Mark's parents were able to make it back from the funeral that had taken them out of town. At some point our bishop showed up in the ER. It was rather confusing, seeing as how I hadn't had time or even remembered to tell anyone in the ward what was going on. Turns out the family that JB had asked to give Mark a blessing was old college roommates and still good friends with a lady in our ward (the primary secretary) - who happens to be next door neighbors with my visiting teacher - who she happened to tell about it - and who had visited us just the night before. I got a phone call pretty quick (minutes after finding out about the growth), but also quickly forgot about it until the bishop showed up. I'm guessing that's how word got back to him. Not long after the bishop left, Mark got a phone call from the Elder's Quorum President (Mark had been unable to handle phone calls earlier so I had taken his phone from him in case someone called). They had chatted at church on Sunday and he wanted to let me know he was praying for us, and asked me to keep him updated and let him know if we needed anything.
We later talked to a neurosurgeon - after he finally got out of surgery (really, it didn't seem that long, but the clock kept saying it was later than I thought it was - all afternoon/evening - pretty sure from 2:00 to 9:00 was only an hour or two in my head). All he was really able to tell us without an MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. He ordered an MRI and admitted us to the hospital. Mark got moved upstairs (Aunt Nila was here by then) and settled into his new room. His parents showed up little bit later, along with Nate, Uncle Tony and Aunt Becky. Everyone stayed for a bit and we realized it was late, so all of the aunts and uncles went home. Nate, JB and Mark's parents stayed. Nate was awesome and offered to bring us some stuff from home. Yup, I'm surrounded by life savers who don't even know it.
We had thought the MRI was not going to happen until the morning, but they called in a tech and had it done just after 10:00 so the Doc could have the results when he came in. Mark's parents and Nate all stayed until Mark got back (JB had to go get Ethan and put him in bed). Mark has been sleeping since he got back (except when they wake him up to check on him). I have been sitting in this uncomfortable chair, with a sore throat, and, surprisingly, a thing or two on my mind, trying to sleep. It hasn't really worked. I think I got a combined hour, maybe two! :)
The doc should be here sometime soon (it's 6:45 now) and we'll know more then. I'm still hoping Mark will come home today and come back for a day or so of treatment sometime later and then all will be well and back to normal! (hey, a girl can dream, right?)
Thursday, March 14, 2013
Mom, You Need to Make or Buy Bread
Yesterday afternoon Shelly came over and says those words to me, in a bit of a commanding voice. Not rude at all, but firmly, as if it was an order of sorts. 'You need to either buy or make bread so I can make my lunches in the morning.'
At first I was in a bit of shock. I mean, really, I'm the adult here. She is not supposed to be lecturing me on what I do and don't need to do.
Then came the agreement. She was right. We were out of bread.
It took a while for the appreciation of what that really meant to sink in. Then I decided I was rather proud of her. She is responsible for getting her lunch ready in the morning and not having bread was preventing her from fulfilling that responsibility.
Basically, she knew what she was responsible for, she knew that she couldn't do her job with missing supplies, and she knew how to get those supplies restocked, and she remembered well in advance, and she took initiative to see that her needs were taken care of so that she could fulfill her responsibility.
Wow. I confess, I was impressed.
Monday, March 11, 2013
My Childhood Comes Back to Haunt Me...
Megan and Adalia moved out over the weekend. Mark and I spent a little bit of time vacuuming and re-arranging the couches in the living room of the Apt and then ended up spending much of the rest of the afternoon just sitting on the couch (and napping - somehow the time change takes it out of ya...). Most of the kids found us and joined us down there off and on. Emily never did come down. As Mark was realizing he needed to go get ready for work, he headed up stairs. It wasn't very long before he was back down, informing me that he couldn't find Emily.
Let the Search Begin!
Let me just start off by saying that we've gotten pretty good at finding kids when they're 'missing.' Often they are outside playing, hiding under a blanket (awake and playing, or asleep and clueless), tucked in a corner, using the bathroom, etc. I've even found kids asleep under the table, asleep under the kids' beds, asleep in the playroom surrounded by stuffed animals... You get the idea.
So, we're on a hunt for Emily. Start with the obvious places: plain sight, in beds, under the crib, under every blanket, under the table/kids' bed, playroom, outside...
No luck.
Move onto the less obvious spots: coat closet, bathtubs, bedroom closets, inside large empty cupboards (we have two at the moment - unless all the toys are pulled out of the ones in the playroom, then we have 4), in the fort in the playroom, outside again but this time with more effort...
Still no luck.
We were contemplating starting on a walking campaign - each going in a different likely direction around the neighborhood - but decided to do one last thorough search of the house. Started in the apartment and looked everywhere a child could possibly squeeze into - again. Finished off the downstairs, came upstairs to put on shoes and grab a jacket (not really at the nervous point, but certainly past the 'don't worry about it, she's fine' point) and realized there was one place left that we hadn't checked. Under our bed. Mark sticks his head underneath and says 'I hear something.'
Turns out she had crawled underneath our bed and fallen fast asleep.
Yea, she's my kid.
-------------------------------------------------------------
For those of you unfamiliar with the story, I was around 4 and in this exact same house being babysat by my grandparents while my parents were gone. Suddenly they turned around and I was nowhere to be found. They searched everywhere, finally called my parents who came home worried. (There is a creek about 1/2 block away that I knew of and they were aware that I could have found it and been pulled into the pipe.) They were about to call the cops when they found me .. are you ready for it? Asleep under the bed. I guess I was playing hide-and-seek (and maybe didn't tell them?) and had fallen asleep while hiding...
Friday, March 8, 2013
Riot Act
On Sunday, Shelly came upstairs complaining that she had been pushed against a door and gotten a doorknob in her back. Upon further questioning, all I got were more offenses by the other child involved. When I went downstairs and after I had gotten other said child in quite a bit of trouble, I heard the 'other side of the story.' I realized that Shelly had conveniently left out vital parts of the story, and subsequently rather firmly informed her of future consequences of lying (the kind of lying that involves telling only half a story to get the other person in trouble whilst avoiding trouble for yourself). When I went upstairs and told Mark all that occurred, I informed him that I had 'read Shelly the riot act, but only read, not actually did anything.' As I stuttered my way through that, I realized that I had no idea what that saying actually meant, and if it implied anything more than 'reading.' So I decided to look it up (thank you Al Gore for inventing this awesome information database now know as the internet - or thank you wikipedia, one of the two) and now I'm going to share it with you!
So the saying is based on a Riot Act of 1715 (at least I think that's the year). It basically says that a group of more than 12 individuals gathered in a rowdy and destructive manner can be dispersed forcibly within one hour of being given notice (hence the 'reading' part). There were some other cool parts (like if injury or death occurs people involved in the dispersing are exempt from prosecution, and in at least one version it fines the neighborhood to help pay for damages - which incentivizes them to help quell riots, stuff like that).
So I guess I actually did 'read her the riot act' and I didn't have to add the part about only reading it, and not doing anything about it yet...
Now you know! :)
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